Adenomyosis is a common disease of the uterus, yet little is understood about the causes and risk factors, diagnosis is difficult, and there are few effective treatments besides hysterectomy. Adenomyosis can exist on its own, or in conjunction with other pelvic diseases such as endometriosis. The incidence of adenomyosis in the general population is not known, because estimates of incidence have only been done in populations of women undergoing hysterectomy.
Symptoms of adenomyosis may include:
- Painful periods
- Painful ovulation
- Chronic pelvic pain (all month long)
- Heavy and/or prolonged menstrual bleeding
- Large blood clots
- Pain in the thighs
Adenomyosis can sometimes be asymptomatic, and it is not known why some women can get debilitating pain and extremely heavy bleeding from adenomyosis, while others have no symptoms at all.
The medical definition of adenomyosis is when glandular tissue, normally only found in the endometrium ( the inner lining of the uterus), is found in the myometrium (the muscle wall of the uterus). Adenomyosis used to be commonly called endometriosis interna, or endometriosis of the uterus, because of the similarity to endometriosis, which occurs when tissue similar to the endometrium is found in the pelvis or elsewhere in the body.
The cause of adenomyosis is not known. There are some studies that associate c-sections, prior uterine surgeries, and/or miscarriages with a risk of adenomyosis, although other studies have found no associations. One theory is that invasion of cells from the surface endometrium into the deeper muscular layers of the uterus can result in adenomyosis. In addition, developmental origins have been proposed, where tissue laid down in the wrong place during formation of the embryo can result in adenomyosis later in life. This theory may be the most likely to be true, as there is some support for this theory in the development of endometriosis, and endometriosis and adenomyosis often occur together.
Diagnosis of adenomyosis is difficult, because there are no tests that can definitively confirm or rule out a diagnosis. In some cases, adenomyosis can be suspected from ultrasound results or MRI results, but normal ultrasound or MRI results do not rule out the presence of adenomyosis. Adenomyosis can also be suspected from pelvic exams, when the uterus is large or tender. Since the main symptoms of pelvic pain and heavy bleeding can result from many other causes, it is difficult to diagnose adenomyosis based on symptoms. Other conditions causing similar symptoms include endometriosis, fibroids, and hormonal imbalances.
Sometimes adenomyosis symptoms can be managed with medication. Pain relievers such as NSAIDs can be used to treat pain, and in some cases hormonal medications such as the birth control pill or a Mirena IUD can treat the symptoms by stopping periods. Medications to control heavy bleeding are often not used by gynecologists, but they can be effective and prevent the need for a hysterectomy if heavy bleeding is the only symptom. The most effective medication for heavy bleeding is Lysteda (tranexamic acid), but DDAVP (desmopressin) can also be used.
Endometrial ablation is sometimes a suggested treatment for the heavy bleeding caused by adenomyosis, but it can make adenomyosis pain worse. In addition, adenomyosis may confer a greater likelihood of endometrial ablation failure. Doctors will often say that “the ultimate cure” for adenomyosis is a hysterectomy. Although hysterectomy is obviously effective at curing uterine pain and heavy menstrual bleeding, it is a major surgery and sometimes has unwanted effects and complications . If we understood the causes of adenomyosis better, we might be able to develop more specific treatments for the underlying cause or causes, and avoid such extreme surgery.
It is commonly stated on medical websites that adenomyosis goes away after menopause. However, it was often said that endometriosis goes away after menopause, and now it is known that for at least some women, maybe most, it does not. We don’t really know the incidence of endometriosis post-menopause because women who complain of pelvic pain after menopause are usually told that the pain cannot be endometriosis, and are not investigated for endometriosis, even if they have a previous history of it. It may be a similar fallacy to believe that adenomyosis goes away after menopause.
It is also often said that adenomyosis is more common in women over 35. The idea that it is more common in older women may come from the fact that it can only definitively be diagnosed by pathology studies post-hysterectomy. Older women with pelvic pain and/or heavy menstrual bleeding may be more willing to have a hysterectomy to solve the problem than younger women, who may want to keep their uterus for child-bearing. Therefore, adenomyosis ends up getting diagnosed more often in the older age group, but may be just as common in younger women. In fact, adenomyosis is starting to be diagnosed more often in younger women, using better imaging techniques.
There are many unanswered questions about adenomyosis and more research is needed in many areas of this disease. Better methods for diagnosis would be extremely helpful, as at the moment adenomyosis can only be confirmed by hysterectomy. Answers about why some women have such severe symptoms while others have none, what causes adenomyosis in the first place, whether it really can persist after menopause, and more, may help lead to less invasive and more effective treatments for this disease.
I am sixty one year old post menopausal who just had a complete hysterectomy 3 weeks ago for occasional moderate to heavy bleeding. I had endometriosis around 30 yrs ago and was about to undergo a partial hysterectomy when I miraculously conceived and with progesterone shots and good care managed to carry to term. Premature, but fully formed and healthy. Of course the endometriosis shrunk during the pregnancy term. For the last few years I have been having bouts of bleeding and lower abdominal pain. Uterine biopsy was inconclusive and the pathology from the d/c showed potential for fibroids and a second potentially pre-cancerous condition. Birth control type treatment was suggested, but birth control when I was younger resulted in blood clots, so I elected to have the hysterectomy. The pathology from the hysterectomy showed Adenomyosis and fibroids. Just wanted to share my experience due to the fact that I am very post-menopausal.
I did have severe pain with periods when I was younger, and before I became pregnant had severe pelvic pain, large clots, very heavy bleeding lasting as long as 21 days with only a few light days before it started again. I wish all of you the best and hope sharing this helps in any way
Yes . Thanks alot for shearing
I had adynymosis and recently had a hysterectomy. (Partial)
Which is great I have no bleeding
I am 59, the doc removed a bulky uterus
But I still have a distended tummy
And seam to gain a bit of weight, hot flushes
And ache more
My tummy is podgy, but soft
Trousers are a nightmare to fit
I almost need maternity trousers
Is this common
Will my tummy go down ?
Or is this it. ?
Anyone else ?
Hi Sue, I don’t have any personal experience with hysterectomy, but I have heard women complain about a swollen belly post-hysterectomy. You might check out the website HysterSisters. They have a lot of information about what to expect after a hysterectomy, and they have forums where you can connect with other women and see what they are experiencing.
Hi, thanks for the helpful article. I have suspected adenomyosis, so have been doing some research about the condition, and I’ve come across quite a few case reports and articles associating adenomyosis with cerebral infarctions, e.g. https://www.ncbi.nlm.nih.gov/pubmed/22142777. Whilst rare, my feeling is that the systemic effects of this disease are underestimated. For example, I personally get very strong flu-like symptoms and migraines during periods- not just uterus pain. So I was just wondering, is there any research on whether hysterectomy truly removes this disease, or is it likely that the systemic effects could continue after hysterectomy, and would it make any difference if oophorectomy is also performed? Many thanks!
Some doctors consider that adenomyosis is a similar disease to endometriosis. The systemic effects of endometriosis are only beginning to be understood, so hopefully in the future there will be more research on potential systemic effects of adenomyosis also. I am not aware of any research that could shed light on whether the systemic effects would go away once the uterus is removed.
My doctor believes that i have Adenomyosis and before i found that out i found out my C-reative protein is pretty high which shows inflammation in the body. I also have been having terrible headaches and excessive sweating… can these symptoms be caused from the Adenomyosis as well?
Any info would be great. Thanks
C-reactive protein is quite non-specific, and they will probably want to do more tests to rule out certain causes. Headaches and excessive sweating are not typically associated with adenomyosis, but they could be hormonal. Do you notice a cyclical pattern? How old are you? Many women have hot flashes/sweating in perimenopause/menopause, and this can start years before menopause.
My doctor just put me on steriods so i’m not sure what else we are going to do. I am 38 years old and i also have been having really bad pains in my very low stomach for almost a year which i thought was just from medication i was on. I don’t notice a pattern…. the headache and sweating just came on quickly and lasted a good 2 weeks until i had the bloodwork and started the steriods.. then it seemed to calm down. I read online that Adenomyosis is an inflammatory disease so i thought maybe that was why the blood work showed high since that is supposed to show inflammation in the body. i’m concerned now that i took my last steriod last night that those symptoms will come back up and it was a nightmare.
I’m almost 36 and have horrible period since I can remember. when I was a teenager I had various laparoscopy procedures they ruled out endometriosis. Periods got better being on birth control but as I got older I did not respond well to hormones but I had my period under control. Then I had my 2 babies by C-sections. Since then I’ve been in and out of the doc office. I’ve had an ablation due to heavy periods that caused me to be anemic. I also had my left ovary and tube removed as there was a cyst causing problems too. For about 2 years I was doin good and then last year I started getting pelvic pain again (no bleeding though). Been back and forth to the my gyno for the past year and was said that my only option was a hysterectomy but as my pain wasn’t severe then and advil was helping it he told me to wait and see. My gynp who has now retired and I’m in the process of getting into a new one. Pain’s been so bad this past month a half I’ve been to ER to a walk in clinic and to my family doc. Advil does not work any more and I’ve got some prescription painkillers but I don’t want to depend on them. Was told by my family doc that I have adenomyosis after a recent ultrasound. He put me on visanne until I can get into the new gyno. But now I’m getting hot flashes and wake up drenched in sweat at night and randomly during the day. I’m always tired and don’t sleep properly. Either wake up in pain or so hot sweaty and then I get cold chills when I try to cool off. Is there any advice or help someone can provide? I’m so frustrated.
The hot flashes and insomnia may be caused by the Visanne, as it lowers your estrogen and can cause symptoms similar to menopause. Adenomyosis is hard to treat with medications. Do you feel that the Visanne is helping your pain? Unfortunately there aren’t a lot of options for treating adenomyosis. Hysterectomy is the definitive treatment if medication options have been exhausted.
I have read that hysterectomy can not be the only one method to treat/subdue Adenomyosis symptoms.
But a Medical Professional told me that they can access the uterus and examine infected areas by Adenomyosis and treat them with a Laser.
Mon 01/10/2018, 16:35
Yes you will have an abdominal scar….it is a bikini incision between the hips
This is an “innovative technique”…Dr. is a General and Vascular Trauma surgeon..6 yrs of training not a gynecologist with 2 yrs. Gyns cannot treat adeno except with hysterectomy…too much bleeding.
The surgery will remove all your symptoms and fertility as well. We have had no recurrence for any women over the age of 40yo. Adeno spreads using estrogen..so if you have high estrogen and many many years to menopause you could get a recurrence. Right now are recurrence rates are less than 3%.
Patricia Marshall BSN, RN,CNOR
Institute for Female Alternative Medicine
14860 Roscoe Blvd.
Panorama City, CA 91402
Thank you for your email.
This is an open surgery, like a c-section. We need to open the entire uterus to fully examine the myometrium. The section of the uterus that has become engrossly infected with adenomyosis will be removed via a laser. This stops all symptoms and will retard the spread of the disease. It involves a 4 day inpatient hospitalization with a 4-6 weeks recovery period. The cost of the program is $22,031 USD to cover all medical care, no travel.
If you have further questions, please let me know.
Patricia Marshall BSN, RN,CNOR
Institute for Female Alternative Medicine
14860 Roscoe Blvd.
Panorama City, CA 91402
Hi I’m 59. And have adynymosis. After being in hospital last year with a blood count of 44 they did a D&C and found polyps too. My periods have finally stopped. But now having a hysterectomy. Which doesn’t make sense as I am better. But the gyneacologist is worried they will grow later. Ablation made my problem worse. I hope this will help now after 20 years of suffering.
I was diagnosed with adenomyosis several years ago, but had symptoms for many years prior to diagnosis. My symptoms of severe bleeding started after I had my second child, she is now 22. I am 47 and was diagnosed with endometriosis at age 16. Uterine ablation made the adenomyosis better for a year or so, then it came back with a vengeance. At one point I needed an iron transfusions due to my iron getting so low. I have limited options on treatment due to having systemic lupus, sjorgen’s and urticarial vasculitis. They want to manage it or brush it under the rug since they claim surgery can flare up my autoimmune conditions or cause blood clots. Doctors tend to take those conditions much more seriously than the menstrual issues. The pain from adenomyosis is as bad, if not worse, than the autoimmune diseases. I am looking for advice for any alternative therapy that may help manage my symptoms. I currently take serrapeptase, nattokinase and vitex (chasteberry) as supplements. They have made some improvements, but definitely not a cure all. I also use essential oils of clary sage, evening primrose and use castor oil packs as recommended by a homeopath(they were not very knowledgable on adenomyosis, but said it helps to balance hormones). Additionally, I follow intermittent fasting (this made the biggest difference, in my opinion) – eating during an 8 hour window each day than fasting for 16, i have a cheat day a week but try to maintain a 6 day program of that practice. I have tried various diets to see if it helps and gluten wasn’t an issue, dairy didn’t seem to flare it up, etc… I do try to eliminate red meat, eat organic poultry, and eat very little processed foods. I go the gym at least 3-4 times a week to do cardio – this is primarily to prevent gaining weight from my maintenance dose of prednisone I take for lupus. I go to massage therapy to help with pain and have also done accupuncture. Despite going to extreme efforts I still have symptoms. Is there anything I can add to help control this awful condition?
I am sorry to hear about your difficulties! Adenomyosis is really hard to treat with medications, and the same may be true for natural methods. It sounds like you are already doing a lot. You can have a second uterine ablation depending on when the first was done–it might help get you through until menopause? I can’t think of any other natural things you aren’t already doing.
I am 49 and suffered many years from Adenomyosis….best help came from clearwoman.com
I was using clary sage and other oils they TOTALLY MAGNIFIED the symptoms…never expected essential oils cause an estrogen response in the body…avoid them like the plague! Also give up coffee all caffeine…avoid all xeno-estrogens….hope you get through it : )
Sorry to hear about your pain
Turmeric powder and black pepper have worked wonders for me . I put it in milk and drink once a day. I now take the tumeric/cumin pills daily. Also apple cider vinegar tea 4 times a week also works wonders. My pain was so severe I couldn’t go to work or leave my home. Now it’s like 95 percent gone.
I wondering if you can give me some advice. I’ve been told I have adenomyosis and I’m seeing the gynaecologist on Wednesday. My mean issue is my weight is out of control. I work out 4 times a week over an hour each time, eat well but I’m just putting on weight and having really bad mood swings, this is been getting bad the last 6months. Can you help me with both
Are you taking any hormonal medications like birth control pills, IUD, birth control patch? Those things can cause weight gain. Typically adenomyosis on its own does not cause weight gain, but often women with adenomyosis get put on hormonal medications (which are not that effective, and can cause a lot of side effects). With respect to treating the adenomyosis, are you having problems with pain, heavy bleeding, or both? As far as the weight gain is concerned, have you been checked for other potential causes of that, such as thyroid problems?
I was dx with adenomyosis about 9 months ago. I am 36 yo and have 1 child, which was delivered by Csection in 2015. I went to my gyn because all of a sudden, my periods just became uncontrollably heavy and long. Basically was told birth control was my best option, so I got the mirena. I had that in for 6 months and just was not happy with it – I never truly stopped bleeding and I had a large increase in vaginal discharge overall, so I just got it out – not even a week ago. 2 days after it was removed my period began and it is back with a vengeance. I use the cup and filled it up in less than an hour. Blood is flooding out of me. It has been for 4 days, and the clots are unreal.
There has to be something else that I can do? Some other treatment? Are my only options truly birth control or a hysterectomy?
There is a medication called tranexamic acid (Lysteda) that you can take during your period to slow the bleeding. It works through the clotting pathway.
I am 57 and am just now being diagnosed with adenomyosis with enlargement of the uterus occurring after the cessation of my menstrual cycle. 10 month ago.. Everything I’ve read says symptoms subside with the onset of menopause… not increase with menopause. ? Could it be a mis diagnose.. The vag US shows the thickening and foci etc without fibroids
A vaginal ultrasound is not a definitive method of diagnosis, but it can definitely be suggestive of adenomyosis. Did you have onset of pelvic pain after menopause? Yes, the usual thinking about adenomyosis is that symptoms subside with menopause. However, doctors used to think that endometriosis symptoms always went away with menopause, and now it is recognized that they do not, so maybe the same could be true for adenomyosis.
I was diagnosed at a fairly early age (25) and I’m pretty sure I’d had it ever since I was quite young. I started periods at 11 years old. I remember one day, I was probably 12, I just laid on my bed all day long cuz my pain was so great and back then and even until now I’ve had extremely heavy bleeding with massive 4″-5″ clots. I have 5 kids. I’m now 36 and symptoms are taking a turn for the worse. I want to have more kids ..my doctor suggested d&c laproscopy/hysteroscopy to clean out the uterus and “prepare” it for conception and also made two incisions in my belly to look around make sure nothing else was going on. Now my pain seems to be more consistent 🙁 ..my hopes of another baby seem to be dwindling further. I’m wondering if the hormonal treatments would work or if I’m getting too old for that and my time is running out.
There is no way to predict whether the hormonal treatments will work, but if you want to have more children, it would certainly be worth trying before moving to a hysterectomy. Most of the hormonal options also work as birth control though (eg. Mirena IUD, birth control pills), so you may need to decide between trying to conceive or trying a medical treatment.
Hi I was diagnosed with Adenomyosis back in Jan 2017 via vag ultrasound and mri. I have reached to 3 top ob/gyn surgeons, the last being Dr. Christina Williams @ Pelvic Pain Centre.. she did some “pain mapping”..said I have mild endo and adenomyosis, however she said why uterus was not enlarged! I am so swollen all the time, pain most of the time, no heavy prolonged periods..periods last only 3 days..I have gained immense amount of weight without of weight since diagnosis of Adenomyosis… my iron went down to 8..then only went up to 12 after 4 months of being on iron supp…my inflammation markers are elevated, my GP believes this is from the Adeno..I wanted to have another child but when testing for my ovaluation I do not ovaluate?? Should I go back to Dr. Williams and ask for a lap excision for endometrosis which may be contributing to my symptoms as well.. she did offered Lupron and I refused..I feel lost as to what to do next..please any input would be greatly appreciated.
If pregnancy is your main goal, you may want to search out a reproductive endocrinologist who had a good understanding of endo. They may be able to recommend whether excision would be helpful prior to undergoing any kind of fertility treatment. Excision can improve the chances of natural pregnancy. If there is endo on your ovary though, excision can reduce the ovarian reserve and so it really depends on your individual circumstances. Polycystic ovarian syndrome can contribute to weight gain and cause lack of ovulation–this might be worth investigating.
Hi there! Not sure you will see this, as I noticed this was an older article. But I’d like some clarification so here goes….
Extremely heavy periods since I was 12 (I’m 38 now), passing clots, severe PMS, back pain, tender uterus and ovaries EVERY day, labor-like pains when I ovulate and most recent issue – I get numbness/burning in my left leg right before I start my period. Almost feels like sciatica. I’ve had 4 kids and 1 miscarriage. No c-sections. A cyst on my ovary 10 years ago.
My Dr. ordered blood work which all came back in the normal range for hormones and clotting factors. A trans-vaginal ultrasound that showed no cysts or fibroids but showed a large uterus. She will do an endometrial biopsy next week. What will that biopsy show? Will it rule out or confirm endo or ando?
I’m done having children, so a hysterectomy isn’t far fetched, but I’m also wondering if agreeing to a partial hysterectomy (leave my lovely ovaries) makes sense? Seems like a major surgery just to confirm whether or not I acutally have ando or not? Wish I could know whether or not I actually have it before undergoing surgery? But something does have to change. These periods/pain leave me in tears and I don’t have time for that with 4 kids and a thriving career.
If you choose a hysterectomy, definitely leave your ovaries in. Please read our articles on hysterectomy and oophorectomy.
I totally agree with Chandler Marrs about leaving your ovaries in. If adenomyosis is the cause of your symptoms, then removing your uterus alone will resolve the adenomyosis symptoms, and your ovaries are important for long term health even after menopause. You may also have endometriosis, in which case a hysterectomy will not resolve your symptoms, and the endometriosis would need to be surgically removed at the time of hysterectomy. An endometrial biopsy cannot diagnose endometriosis or adenomyosis. Sometimes a MRI or ultrasound will show evidence of endo/adeno, but you can have either or both of those diseases with normal MRI/Ultrasound unfortunately. So MRI/ultrasound is really only meaningful when there is a positive result.
Hello! I was diagnosed with adenomyosis about 4 years ago at the age of 48. I have had 7 gyno surgeries (which ironically probably led to the adenomyosis) but it’s so difficult to know ‘what came first’? My gynecologist said in order to do a hysterectomy he would have to do a full incision – top to bottom as I have had too many key-hole surgeries (5) and 2 c-sections. My periods WERE so heavy that I ended up needing iron infusions – I was loosing so much blood. He kept reassuring me (he is a great doctor and I do trust him) that once my periods stopped the chronic back pain, horrible monthly cramps, anemia, etc would end. It has been 6 months since my last period and although the anemia is gone (hurray – both my ferritin and hemoglobin are normal) – the back pain has just gotten worse. I just had a trans vaginal ultrasound (5 months ago) and he said all was “normal” – well as normal as things are for me. No change is the size or shape of my uterus, no ovarian cysts etc. I was reading that estrogen deficiency can cause low back pain. I am not a candidate for HRT as I had a reaction to low dose birth control about 3 years ago (all checked out ok but I can’t take it anymore). I do everything right – working with physiotherapist, eating well, exercising but the pain is just awful. Is it possible (going out on a limb here) that my uterus is shrinking and if there are adhesions (which I am sure there are) that this might be causing the pain? On one of my surgeries they had to take out my ovary because it was “stuck down” to my pelvic wall. After that surgery I was told that everything else “looked fine”. Is low back pain also a sign of menopause? I will have to go and see my gynocologist in the fall but was curious if anyone else has experienced symptoms like this? I was praying that this constant chronic pain would go away with menopause but it actually just seems to be intensifying. Thanks ladies!
Do you also have endometriosis? It sounds like it with your ovary stuck to the pelvic wall. This may be responsible for your continuing pain, or it could be adhesions as you suggested. Have you seen a pelvic physiotherapist?
My situation (I’m 34 by the way) started after a recent hospital stay (yay for Type 1 Diabetes & stupid sicknesses… *sarcasm*) with which I ended up with a blood clot in my shoulder area thanks to the picc line & dialysis port sites, so they took me off the regular birth control from the estrogen being a clotting risk. A few weeks after returning home, my ‘shark week’ returned…then a few weeks later another one (figured my body was just trying to figure out normal again)…then a third one within 1.5 months that was even more painful than my normal. OBGYN had me do the inner ultrasound & she’s pretty darned sure I have adenomyosis. Reading more & more about it, I think I may have had it to a lesser extent for many years. Before I was on birth control 8 years ago I did have fairly bad cramps & slightly heavy flow with definite clot globs on the main 3 days with emotional rollercoaster, exhaustion & hot flashes the whole 5-7 days & a few days beforehand since the high school years at least. I always thought the globs & evil cramps were fairly normal, it’s not something sex ed & biology classes really delved into. Now, since I’ve been put on a blood thinner, I’m curious if anyone knows if there is any connection between the clotting due to adenomyosis & results from coagulation testing like INR levels, Chromogenic Factor 10 & others? I’ll be asking the Hematologist when I see her since the adenomyosis discovery was much after I last saw her, but figured I’d see if any of you know. I ‘m pretty ok with most of the idea of hysterectomy as my husband & I didn’t want kids, but for now on progesterone only pills to manage the symptoms until we can get time & paychecks arranged for surgery & recovery time. Just another episode of my wonky body.
Typically the clotting seen with menstrual bleeding with adenomyosis is because the bleeding is so heavy, not related to a clotting disorder. But it is certainly possible to have both a clotting disorder and adenomyosis. Will you be on the blood thinner permanently? It may take your cycles a while to regulate after coming off birth control. Regarding hysterectomy, for adenomyosis there is no need to remove the ovaries at the time of hysterectomy, although quite a lot of doctors (especially older ones) still do it. It used to be thought that if you were doing surgery anyway, you may as well remove the ovaries too, in order to prevent cancer. However, now we know that ovaries are important for a women’s health even beyond menopause, and that removal of ovaries can increase the risks of serious health problems.
I had a hysterectomy for adenomyosis at age 32. I had all the typical adenomyosis symptoms beginning with my first period at age 12. I told my mother, but she said it was normal. Of course, she had a hysterectomy at the advanced age of 26, so maybe I should have asked someone else. I spent 20 years telling doctors about my symptoms and being told I was overreacting before someone listened. One doctor prescribed birth control for the symptoms, but it made me violently ill no matter which one I tried. It turns out I have a homozygous MTHFR C677T mutation, and endometriosis/adenomyosis is a common ailment for people like me. (We also have trouble with hormonal birth control, as it turns out.)
Good Day Phillipa,
I came across this site by pure chance on pintrest and glad i did.
I am a 45 yr-old in Calgary married with 2 kids 19 & 15 yrs and have just been diagnosed with adenomyosis.
I was bleeding for 3 wks with rather large clots (way bigger than normal), doctor sent me for an ultra sound with internal and bloods. Called back the next as my blood count was down 20% and gave me results. The dr put me on Tranexamic Acid (made me feel awful), which has almost stopped the bleeding after 4 weeks. He has spoken about burning the uterus or hysterectomy! Which would be my last resort as i’m scared of all the horror stories you hear of saggy belly, weight gain and week bladder!
I have been taking Hema-fer for the last 3 month due to low iron and rest less legs, which i finished. Then after I finished them i had 3 wks of period pains, sore boobs and up and down with emotions. Finally my period started!!!
I was wondering if the Hema-fer could of had any doings bringing this forward after i stopped them?
I have read all the previous threads and found that maybe i was getting some odd symptoms that i didn’t realize could be connected, hot flushes night time and especially first thing in the morning ( pre-menopausal), stabbing pain when i have my period when i need to poo, mood swings and always clots!
This has caught me way off guard and at a bad time, and not knowing which way to turn. I don’t feel old enough to be going through this or ready. Not sure which way to turn or where to start first, i see most people start with the pill, marina coil or hormone tablets. I came across a vascular surgeon in LA who does a different form of surgery without removal of uterus with great reviews , but unsure?
Any advise or info appreciated.
Hi there. I really hope u can help me. I am on the wait list for a hysterectomy in weeks time. It is by chance I ended on this site.
I am 39 in the UK. I have 1 child by c section 10 years ago. My problem started few years ago, heavy bleeding. Coil failed and triggered severe nickel allergy I believe. I had an endometrial ablation. It failed. The pain is intense. Uterus enlarged every month. They have said adenomyosis and hysterectomy as solution as I cannot tolerate meds. I was told there would be no change in body shape etc which I don’t believe for a minute. I would appreciate any help u can give. Many thanks.
I don’t really know of any options other than those you have mentioned. Medications don’t tend to work too well for adenomyosis, and you can’t tolerate them. There are a lot of articles on hysterectomy on this site, and there can definitely be unwanted effects, but if you are doing the hysterectomy because of bleeding and uterine pain, I would suggest talking to your doctors about keeping your ovaries. This would provide you with your natural hormones and will allow you to avoid some of the more significant effects of hysterectomy.
Thank you for your response. I have a meeting with my gynae next week to discuss my fears. I have come across a site in California saying they offer a laser surgery for adenomyosis which is less invasive and allows you to keep your uterus have you ever heard of this? I’m in the UK so it’s not practical lol but it’s called ‘alternative surgery.’ Many thanks.
I am not aware of a place in California specifically. I know that if you have localized adenomyosis (called an adenomyoma) then sometimes just that area of the uterus can be removed. But usually the difficulty with adenomyosis is that it is quite diffusely distributed throughout the uterus.
Hi Louise, you may be referring to MRI guided focused ultrasound (MRgFUS) which has so far proven to be a really effective, non invasive treatment for certain forms of afenomyosis. It is more readily available in America but there is only one available clinic in the UK and its only available privately. If it interests you, here is the link to the clinic which provides the treatment.
Hi im donna. I’m 28 years old. I was diagnose with adenomyosis last 2011-12.
Then late this May I’m clear this with.but I still continuing my medication to stop menstruation so it wont get back.
Hi Donna..what medication did u use?
Hi, I was diagnosed 2 months ago, still trying to accept it all, I’m only 35. I started 2 years ago with my path asking MD’s for advice, on my 14 – 17 day periods, then about 10months ago I was almost permanently PMS’y, thought I was bi-polar went to see psychiatrists and he said it not my head it’s my body affecting my moods. Went to Gynea and I got diagnosed. So on mood stabilizers, which helps me a lot, and everybody around me 🙂 I am experiencing something new, it’s like my symptoms are getting worse and my breasts have been tender for about 6 weeks, use to it during PMS but this is continual, is this a symptom you know of. I am only going for hysterectomy in December.
Adenomyosis symptoms can get worse over time. I am not aware of any connection to sore breasts–that is usually hormonal. Have you talked to your doctor about it?
I am tearing up reading this…Although I am sorry you feel this way,it is comforting to know that I am not alone. I will be 36 this month and feel like I am 60. It seems to get worse every day. My Dr. recently diagnosed me and started me on the pill. I’m not sure how long I can take this pain. The pelvis and back pain is the worst. Have you had back pain? I’m thinking that a hysterectomy is going to be my best bet…My marriage and life are too precious to me to sit and wait if maybe it will cease after menopause.
Do you know whether there is any chance you have endometriosis as well? It often goes hand in hand with adenomyosis, and it can also cause back pain. I have both endo and adeno, and I had terrible back pain. Before considering a hysterectomy, I had my endo excised surgically and I was happily surprised that my back pain resolved completely. Just something to consider, because I know hysterectomy is a big step.
Hi, Philippa! I have suffered from sacral back pain for years. I am 46, had two children vaginally at 37 and 42. After their births over time my periods began to take over the entire month, with heavy blood clots, a distended belly and menstrual cramps which felt like back labor. I became anemic and therefore tried the Mirena, which I couldn’t tolerate and had removed after three months. I did have an endometrial ablation this past July which did help as there’s less tissue to swell, however, this month the dense, heavy and nerve-tingling sensation in my uterus and pelvic region have also increased … along with the acute sacral back pain that I manage on a daily basis, but which worsens with my cycles (even though I no longer bleed due to the ablation.) My mother had a total hysterectomy at age 36 due to endometriosis. Is there a genetic component? Also, I am puzzled by how they can locate and excise endometriosis in various areas as you shared, but have such a hard time confirming and excising adeno. May I ask where and how they excised your endo? Honestly the back pain I have is my biggest impediment. It has taken over my life, yet I am only now putting all of the pieces together that my symptoms may in fact be connected to the adeno with possible endo as well. I have seen a pelvic floor PT who said my pelvic floor was as tight as could be and “terrible.” I did read adeno can also affect the pelvic floor. I wonder if this contributes to my back pain as well. I am considering an uterine hysterectomy. Could you share your thoughts on diet for these conditions as well? Thank you.
I had some heavy bleeding during periods and my gyn recommended an oblation. It sounded like the cure all so I had the procedure done.
The bleeding improved however within a few months I started experiencing excruciating abdominal pain every month when I should have had my period. He kept telling me oblation was a success and there’s nothing wrong. This went on for months. The worst pain of my life. He once reluctantly wrote me an ex for pain medication because I was unable to get out of bed. All the while insisted there was “nothing wrong”. This nightmare went on for months and months. One month I called him and begged him to call in a RX for pain medicine and he literally yelled at me said nothing was wrong he was not giving me any more pain medicine and told me to go to the emergency room. I have never been so humiliated in my life.
I ended up seeing a very skilled renowned dr who ordered an MRI and diagnosed with with Adenomyosis. After careful consideration it was revealed that doing a hysterectomy would be quite difficult because parts of my intestine were adhered to my uterus. I said in 3 mos if this continues I will do the surgery.
I’m thankful to say it happened two more months and then nothing! I was starting to go through menopause and thank God it’s been over a year and a half and I have not had an attack. Every months of go see my gyn and tell him I was doubled over in excruciating pain and felt like I was in hard labor. I was disregarded. The oblation in fact made this disease worse. The blood was trapped and because the blood was trapped in the myometrium with no way to be released since the lining had been burned away from the oblation. So ladies if you know something’s wrong find another doctor that will listen and do the necessary tests. I was treated so rudely that I left that practice and I’m glad I did. I finally got the diagnosis instead of being made to feel it was all in my head!
I had worsening of my pelvic pain after endometrial ablation as well. I am sorry to hear that your doctor was so dismissive of your problems. Thank goodness that your pain subsided.
My mom died of breast cancer that was fuelled by estrogen. I understand that adenomyosis
Is also influenced by estrogen – may this increase my risk for cancer? What treatment options are available if you
Don’t want to go the hormonal route – given my family’s cancer history
Also – When a transvaginal ultrasound identified
Adenomyosis can it be graded? I.e. does this mean it is more severe since it is
Seen on ultrasound ? Is there a link between lynch syndrome and adenomyosis?
There is no known association of adenomyosis with cancer or lynch syndrome.
Treatment options are pretty limited without hormonal medications, but the hormonal medications don’t work very well for adeno anyway. You could try some natural options. I would look into natural options that help endometriosis, because there is a lot of similarity between the two diseases. Adenomyosis is like endometriosis in the muscle walls of the uterus. Diet/nutrition may be helpful. Here is a good article on managing endometriosis symptoms with nutrition: http://www.hormonesmatter.com/easing-endometriosis-pain-inflammation-nutrition/. Both diseases have inflammation as a central problem, so eating an anti-inflammatory diet can help.
The definitive sure for adenomyosis is hysterectomy–if you are going to go that route I would strongly suggest keeping your ovaries, as there is no reason to remove them to treat adenomyosis, and removing them causes surgical menopause, which can be difficult to manage.
There is no grading system for adenomyosis, but I have been told that in general when it can be seen on ultrasound it may be a more severe case.
Thanks so much for the speedy response! This was really helpful. I am on an anti-inflammatory diet after seeing a ND 3 years ago following my last child and frequent sweating and weight gain. She told me that my estrogen levels were high then so I thought the diet helped as I lost the weight but the sweating at night still an issue btw, – I am 44 finished having children . So obviously my estrogen levels are still high given the adenomyosis and the small fibroid I have. Is it possible that I could have endometriosis too? Never diagnosed – would this have been seen On the ultrasound? Also the reason I ask about lynch syndrome – is I recently had genetic counselling because of colon cancer and stomach cancer history in my family as well my mom’s breast cancer. I was told this increased the risk of endometrial cancer so I wondered about the potential link with adenomyosis as I will be tested for lynch soon and if that is there then they recommend hysterectomy – what are your thoughts on that ? Finally, if there is no grading system for adenomyosis – how do doctors determine mild cases from severe ones ?Thanks so much!
All very good questions!
You are probably in perimenopause, which is a period of about 5-10 years prior to menopause. During this time, hormone levels can fluctuate quite a bit and cause certain symptoms. The night sweating commonly happens during this time. The hormone fluctuations can also aggravate hormonally responsive conditions such as adenomyosis and endometriosis.
Endometriosis cannot usually be diagnosed by ultrasound. Whether or not it is likely that you have it depends somewhat on your symptoms. The three classic symptoms of endo are pelvic pain (can be severe pain with periods, but can also occur at other times of the cycle), painful intercourse, and painful bowel movements. Of course there are other possible causes of those symptoms as well, but if you have one or more of those, it could be worth investigating endo. The only way to know if you have it is through laparoscopic surgery, and it can be treated at the same time. Most gynecologists don’t have a very good understanding of endo, and don’t perform very effective surgery though, so it is important to pick one with a good understanding of endo. You can find out more about which doctors are effective at treating endo by joining this Facebook group: https://www.facebook.com/groups/418136991574617/. If you let me know that you plan to join, I will give a heads up to the admins to approve you.
With the Lynch syndrome, often doctors will recommend organ removal in certain cases to prevent cancers that you may be at high risk for because of genetic mutations. Whether or not to proceed with that is up to you. If you find a doctor who does laparoscopic hysterectomy and will leave your ovaries, this may be a good solution because it will resolve your adenomyosis symptoms as well. And if you go with an endo competent gyn, they can look for endo and treat it within the same surgery.
Mild vs. severe adeno is mostly based on symptoms and how disruptive they are to your quality of life.
If bleeding is a main concern, I use tranexemic acid and find that it helps. It does not affect your hormones and is very effective in stopping heavy bleeding for some women.
Yes please! Would definitely like to
Join…as a FYI I am going to see an obgyn
Sunnybrook soon re: this to find out options and severity – so this
Discussion very helpful !
I did not realize you were Canadian. My gyn is at Sunnybrook as well. We have a Canadian endo group where you can ask questions about the Canadian doctors as well. https://www.facebook.com/groups/TheEndoNetwork/. You will be in good hands there. The gyns are very up on modern treatments and they have the highest rate of laparoscopic hysterectomy in the province. And they will be proactive about preserving your ovaries if possible.
Hello! In searching today for info on my 2008 diagnosis post-kidney donation, I have stumbled on this! I went to the FB page and would love to talk to anyone experiencing this disorder. Other than the internal ultrasound, subsequent diagnosis and Marina IUD, I’ve never spoken to anyone -in or out of my primary health care. It’s been isolating, actually. And I feel uneducated on my own health. I turned 51 in January. Thank you for these posts!
By the way, Nancy asked that you reapply to join her group (Nancy’s Nook)–she didn’t see enough information on your FB page to admit you on the first round, and that was before I contacted her. They are a large group get a lot of spam requests to join and fake profiles or people trying to sell things.
Thanks so much!
Is it possible to message you on Facebook about gyn. I am going to see. Also wanted to thank you so much as I find the Facebook info. Useful too! One question I had is- I tend to have really painful cramps – lower back pain and a pain to the left side – I actually thought near my ovary when I get my period. However while my periods are heavy the first couple days I would not describe flooding – when I read about adenomyosis it seems that women have excessive bleeding – does it always cause heavy bleeding ? I don’t even know how to quantify it!
Hi Sharon, Yes, please go ahead and message me. And check out this article on heavy menstrual bleeding: http://www.hormonesmatter.com/heavy-menstrual-bleeding/. Regading the back pain, that can be from adenomyosis or endo, and the left-sided pain could definitely be endo.
Hello Dr. Bridge-Cook,
I’m 56 years old. And have no signs of Menopause! I had Estrogen fed Breast cancer in 2005. Heavy bleeding began 2009. Several Polyectomies, Uterine Ablation (failed) MRI confirmed Adenomyosis Dec 2015. Confirmed stage 4 Uterine Prolapse and weak bladder muscle. My uterus is HUGE and presses on my bladder which, while keeping me from being incontinent, it also can cause difficulty in urinating depending on where it is. It seems to float around in my abdomen on it’s own accord! Clockwork periods every 27 days, but extremely heavy and many blood clots. They last about 5 days. No hot flashes, clockwork periods, no vaginal dryness, nothing. The periods are extremely debilitating and interfering with my life and work. I am unable to take any hormones due to BC. Can’t do Mirena IUD because uterus is too large. I take Tranexamic acid which helps some. Here is my concern: I am afraid of having this much estrogen in my body at 56, and I’ve been told I would have to have not only an abdomen cut hysterectomy due to the size of my uterus, but the bladder may have to be addressed if the uterus is removed. I have been hoping for menopause for years thinking this would alleviate my problems.
Now you are saying that it may continue after menopause?? Ugh, do you have any recommendations for me? I’m trying to avoid a major hysterectomy. Thanks, Mary
I have adenomyosis can that cause headaches and facial pain
I’ve never heard of that in association with adenomyosis. Have you looked into TMD disorders? http://www.webmd.com/oral-health/guide/temporomandibular-disorders-tmd
I have debilitating headaches, some facial pain, and fatigue. Especially during ovulation. I had excision surgery for endometriosis, but continue to have headaches, fatigue, pelvic pain etc. I was told that I have adenomyosis as well.
I have had complete absence of pain using Pro-gest, natural progesterone. The birth control does not work. Only natural progesterone stopped my pain, helped me lose 10 pounds and stopped heavy menses. Blood clots are gone. Also, my moods are now back in control.
That is great! I think it is a good idea to see a naturopath in addition to a regular gynecologist.
Please mention what is natural progestrone.
Hi Phillipa this is my first ever post so I hope this question gets to you. I live in the UK and I have recently been diagnosed with Adenomyosis after an MRI scan. I am 54 and I want to know if there is any connection between this condition and menopausal sweats? I have not had a good sleep in about 5 months now due to these intense night sweats day and night. It may be a coincidence that these have occurred around the same time of my diagnosis. However it is ruining my life and I am considering HRT but I am not sure if this is a wise decision. I have no history that would be damaging if I did take HRT. I just find it odd that these sweats are rampant since I have had the MRI scans and I am not sure what to do.Is it possible this condition is making my menopause worse? I am in the process of deciding what to do about the adenomyosis (i.e nothing, a hysterectomy, or embolisation).My periods ceased 4 years ago and I have had sweats on and off but nothing like this at the moment. The adenomyosis is not causing me too much trouble beyond swollen stomach and urinating a lot (I believe the growth 10cm x 2cm is pressing on my bladder). So I have two choices and not sure which direction to go (i.e HRT or not and/or hysterectomy or not)? If I had a hysterectomy I don’t know if the sweats would get worse or not? Or is HRT the answer and just leave the adenomyosis alone. I know you can’t tell me what to do but any advice would be most appreciated. I am at a loss at the moment and the doctor is not so informative and helpful so that is why I am on the internet.
Any advice would be most welcome Phillipa
I don’t know of any connection between adenomyosis and menopausal night sweats. Often night sweats can be managed naturally with supplements–I would suggest seeing a naturopath who specializes in women’s health. In terms of treating the adenomyosis, there is not much information that I am aware of about treating adenomyosis in a post-menopausal woman. In pre-menopausal women, usually the medical treatment is aimed at stopping periods, with continuous birth control pills or other hormone medications. I am not sure if HRT would be helpful or harmful to the adenomyosis symptoms. Embolization is usually for fibroids, not adenomyosis. Sometimes it can be hard to tell the difference between fibroids and adenomyosis on imaging. Maybe you have a fibroid, in which case embolization would be good to consider. I don’t know a lot about the resources in the UK but you might consider contacting the charity Endometriosis UK–they might be able to direct you to a gynecologist who specializes in fibroids or adenomyosis.
I wanted to respond to the above email regarding adenomyosis and the excessive hot flashes (I was experiencing hot flashes about every hour, some so extreme I would just go completely red and sweat profusely). I too was diagnosed years ago with adenomyosis after having terrible bleeding with large clots. I did have an ablation done at that point which did reduce the clotting, although I was still affected with heavy bleeding for some time afterwards. Then it all miraculously stopped as I entered into menopause, no periods but extreme hot flashes. I have been seeing a naturopath for around 2 years to try to cope with them and they are being managed now, however, because of the severity of them, we had started on two compounds, one of progesterone and then after a year or so an estrogen compound (along with supplements). After a number of months, I started to get a period again (4 years after having no periods) accompanied by extreme back pain. I have since stopped the compounds although still on supplements (hot flashes are manageable at the moment) and had another ultrasound which mentions the adenomyosis again, so I will be going back to the gynecologist who originally did the ablation and diagnosed me the first time. I feel like I have been suffering for years with periods and hot flashes and struggling with what I believe is a hormonal imbalance and hampering my ability to lose weight. It has been very frustrating over the years! I have no idea how these two things can be related as everything I’ve read has suggested issues with adenomyosis cease once you reach menopause, but I feel like there is some connection with the out of control hormones and hot flashes. Not sure the outcome as my appointment with the gynecologist is in a month, but have been very frustrated with my body over the last number of years as I try to keep physically fit, have spent a fortune at the naturopath and have switched to a paleo/gluten free diet! Because of changing doctors a number of times, going to a naturopath, I really don’t think I was paying enough attention to the adenomyosis diagnosis and how it continues to affect my body. FYI, I live in Canada and am 56 years old!
I live in British Columbia, and I must say that I always THOUGHT we had some of the best Dr.’s & Hosptials in the country – until I needed one!
At 46 years old I had never had a problem with my periods. I have had 2 children and one etopic pregnancy in ’94. Now all of sudden I have been experincing left sided PAIN for 1 1/2 months with non stop vaginal/uterine bleeding.
Over 2 days/visits, in the ER, I was tested for a bladder infection (negative) kidney stones (negative) and then Fibroids/Cysts (negative). An internal and external ultrasound that came back in-conclusive (as they asked for a urine test right before sending me for an ultrasound).
After 2 hospital er visits their response was well ‘we don’t know’? The Dr. was convinced I had Fibroids (I think I dispointed him b/c his diagnosis was incorrect). Take Morphine for Pain, Naproxen for inflammation, and 100mg of Progesterone (even though your hormone levels are normal), but it should stop the bleeding within a few days. I then asked him about my Tegretol medication which I take for an acute seizure disorder, and if there are any interactions? His response was ‘YES there is an interaction’!, so if your seizure medication blood level decreases just get your family Dr. to give you more. WHAT!!! ARE YOU SERIOUS!!! My family Dr. doesn’t even prescribe this medication – my Neurologist does!
The end result is that there has been NO CHANGE WITH NOTHING!! It has been 2 weeks on that progesterone with no positive result.
I feel like the door just got shut in my face when the diagnosis wasn’t obvious to ER. This exact same situation happened before my diagnosis of Grand Mal Epilepsy. I had a major seizure in ER in front of a Neurologist, before they fianlly took me seriously! I can suggest all these different ideas to Dr.’s about what I may have or tests, but Dr.’s run their own show.
I’m personally sick of this, and I don’t know who to talk to anymore? Does a person need to be on their death bed before receiving adequate help?
Nevermind the unprofessional conduct I had seen (as someone who has worked in the medical profession for almost 20 years) I can tell you I would have been fired on the spot- for some of the stuff I had seen!
I know I sound very frustrated / negative about my situation and the system, as maybe I’m just venting. Any logical plan of action at this point would be greatly appreciated.
I am Canadian as well, and I can tell you that I hear MANY complaints from women about issues with our health care. It is not limited to Canada either–women everywhere have significant problems with having their concerns dismissed and inadequately treated. I think that gynecological care in the ER is often not very in depth, so you would really need to have a good gynecologist to help you with this. I would suggest you check out Dr. Christina Williams at the BC Women’s Centre for Pelvic Pain and Endometriosis: http://www.womenspelvicpainendo.com/our-team/.
In terms of how to coordinate your gynecological care/medications with your epilepsy, your primary care doctor (family doctor) is in theory responsible for this, but many do not. If you aren’t getting enough help from him/her, you may have to do the leg work yourself and bring your test results to the neurologist and vice versa if there is info your gynecologist needs to know. It can be useful to request copies of all of your test results and keep them in a binder that you take to appointments. A pharmacist is usually more knowledgeable about medication interactions than doctors.
I have felt the same as you in the past–do I have to be on my death bed to get help. You really have to be very proactive and persistent to get the care you need. I hope you can find some better care soon.
Hi. I’ve been diagnosed with adenomyosis some years ago, and with a long and tortured journey managed to have my miracle son 4 years ago. We would now like to try for a second baby (I’ve had trouble getting pregnant but then also keeping babies) and I’m wanting to do everything possible to help. In terms of diet, what are your thoughts on what works with adenomyosis?
Hi Trisha, there are no data or studies specifically on what type of diet would help for adenomyosis. However, there are a lot of similarities between adenomyosis and endometriosis, and there is some research on what type of diet helps endometriosis, so following some of those diet recommendations may help. Check out this article for some good information: http://www.hormonesmatter.com/easing-endometriosis-pain-inflammation-nutrition/.
you say that adenomyosis can only be diagnosed through hysterectomy – this is not correct – since mid-1990s, adenomyosis has been diagnosed through trans-vag MRI.
At the moment the only truly definitive diagnosis of adenomyosis is through pathology studies of uterine tissue after hysterectomy. As I stated in the article, sometimes adenomyosis can be seen on transvaginal ultrasound, or by pelvic MRI (there is no such thing as a trans-vaginal MRI). However, if ultrasound and MRI are negative for adenomyosis, that does not rule out the presence of adenomyosis. You can still have adenomyosis, even if ultrasound and MRI are negative. When ultrasound or MRI show evidence of adenomyosis, then a tentative diagnosis of adenomyosis can be made, especially if the clinical symptoms match.
I’m sorry to hear that your doctors aren’t listening to you and taking your concerns seriously. Unfortunately this is a common occurrence. When this happens it can be useful to get a second opinion. I would suggest looking at The Endometriosis Network Canada website (www.endometriosisnetwork.com) and look at our list of specialists there. Although these doctors are on the list because they specialize in endometriosis, they should also be quite knowledgeable about the problems you are describing (pain, cysts, bleeding). You can also ask on our facebook group about doctors in specific areas on Canada (search for the Endometriosis Network Canada on facebook). I think the first step is getting to the right doctor.
Regarding the bleeding, there is a medication option for heavy bleeding that is not always mentioned by gynecologists. It is called tranexemic acid. It works in he blood clotting pathway to reduce heavy menstrual bleeding, and should help regardless of what the root cause of the excessive bleeding is. You can ask your doctor specifically about this medication. I take it, and for me it helps a lot, with few side effects.
If you have been bleeding heavily for a year and a half, you should also ask your family doctor to check your hemoglobin and ferritin levels. You may have iron deficiency anemia or low ferritin, which could cause you to feel weak. This should be treated with oral iron supplements, or if your levels are really low, with an IV iron infusion. There is an article I wrote on the Hormones Matter site about this issue (http://www.hormonesmatter.com/overlooked-cause-fatigue-low-ferritin/).
Hope that helps.
I am in Canada, and I find my doctors don’t really listen and they can’t find the answers. I have been bleeding for 1 and a half years now with a lot of pain as of recently and weakness. I get blood clots constantly with the heavy bleeding and pain. My period was always irregular, but it has never been this bad before. A few years ago, they found a cyst on my ovary that was growing and my uterus was swollen. There really wasn’t anything they suggested at the time to help besides taking birth control, which I have always found doesn’t work for me and makes me sick.
When the bleeding started a year/half ago, I went to the doctor and I was prescribed birth control again, and I also was sent for multiple blood tests and an ultrasound. The tests came back 100% normal. I was then recommended by my doctor to a gyno, and he did a pap smear and pelvic exam, and he thinks the problem is PCOS and told me to go get a blood test again. I am confused by that because if the several other blood tests I did came back normal, how will this one be any different?
What is the best course of action I can take to get a doctor to take me more seriously and get them to find the problem?
Yes, diet, exercise, and stress management can definitely help with pain control. Glad you are feeling better recently.
i first knew bout endometriosis back in 2008, when i went in hospital due to abdominal pain unable to site was awful pain as though i had a voodu doll with pain from my rear all the way up my lower back , round my lower ribs and sharp electric shock pains
at first many occasions previous i was told i had bad period pains its normal,constipation, or ibs
but in hospital i was unable to cope and a doc informed me i may have chocolate spots the doctors nick name for this condition they gave me some realy strong pain relief tablets and advised me to discuss with my doctor.
when i went to see my doctors they sent me for many scans & a camera to check but the funny thing is when ur on periods or have fluid in the area below they are unable to see with the camera which was all useless
and advised me their is no way to check unless they do a loposcopy but wasnt any point as nothing was showing through the camera etc
so i gave up and did everything possible to avoid stress as that used to make the pain 10x more painful
then in 2012 i went through a stage of worse pain the before felt like something was ripping inside of me i couldnt breath
and they wanted me to do what ever test to confirm i wasnt pregnant but i knew i wasnt as their was no way possible but they didnt listen
but the pain continued and they sent me off for a a scan and check up in the gynocology dept then i was told they wasnt sure if it was my appendix or theendometriosis
the gave me morphine and oxigen i felt they was more entertained bout my pain and asked if i had been putting anything in my rear area due to the electric shock pain i was having
they then sent me off to then other dept to have my appendix removed and further checks from their
they realised i was meant to be on the gynocology ward but coz of the other checks they removed my appendix and took some pics of the endometriosisand put it on my med file and advised me to come back and discuss further
they ghen confirmed that this condition is gard to confirm and best way to check is teloscopy but also its difficult as the cells can be anywhen in the body and move around easy where ever the womb cell go which is one cause
also due to research n experience you can maintain this condition by removing foods from ur diet which can cause bloatness and to eat light foods fresh veg fruits during and before the time ur menstral cycle
its works for me and may work for many but you have to do excersie or walks and balance your life if ever you get stressed spk to a councellor as your not alone and everything to avoid stress
makes a big difference
wish you all luck but im feeling more positive and been pain free but just the crewl pain free last few months or so hope this stays
take care xx