Not Endometriosis. Now What?

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I was functioning under the assumption that I had endometriosis. It seemed the most likely disease based in the information given me by my doctors. I underwent a diagnostic laparoscopy and waited for my surgeon to follow up with me.

It’s Not Endometriosis

As it turns out, I don’t have endometriosis and my internal structures appear normal. I’ve been referred to a pain management specialist. It has been suggested that I might see a neurologist as well. “If we can’t find the cause, we can at least treat the symptoms. You may have a rare form of cystitis, or you may not. Please try to focus on the good news: you don’t have cysts or tumors or scar tissue,” said my surgeon. I admit I was very disappointed in a strange way. It’s the very human need for an explanation. Without a known cause, how can we stop this from returning again?

Four days after surgery, I got food poisoning. I recovered after five days.

However, now I am terribly dizzy and have severe fatigue. Is it related to the endometriosis-like abdominal pain or something else? I can barely stay awake. In fact, I sleep most of the day and night. It’s not sleepiness. I simply cannot stay conscious. I’m always hungry and eating, but I’m losing weight slowly. There is ringing in my ears on and off. I find myself confused by simple tasks. I tried to fry an egg on a good day and found I couldn’t lift the pan. I’ve fainted twice last week: once after a blood draw, and once just in my home after a stressful conversation.

My general practitioner has run blood tests for anemia, vitamin deficiency, diabetes, and thyroid disorders, as well as a comprehensive blood count. He also told me that most of the time, when trying to diagnose fatigue and dizziness, these blood tests come back normal. I should be prepared to search for other answers. Diabetes and thyroid disorders run in my family, and I’m really hoping it’s easily found out so I can find treatment soon. My ears were checked for infection, and they appear fine. He also suggested that it could be severe depression, but I’m not so sure. I’ve had depressive episodes before, and while I was sluggish and slow to make decisions, I wasn’t this dizzy or weak.

Symptoms that Led Us to Suspect Endometriosis

As for the pelvic pain, it started in late November, very sharp and stabbing on the right-hand side over my ovary over the course of two days, growing rapidly more painful. The ER docs said it was a ruptured ovarian cyst, and noted that when pressed, my left ovary was very tender and painful as well.

That pain was supposed to heal in three to five days and just didn’t, growing less stabbing. It was a constant ache, day and night, for four months over my right lower quadrant with intermittent sharp cramping. When pressed, my left lower quadrant was just as painful, but didn’t throb or cramp on its own.

A course of progesterone halved the pain. Birth control dampened it a bit more. Hot baths and heating pads also helped somewhat. Exercise made it much worse, as did standing and walking for even short periods or leaning over. Pelvic exams and ultrasounds also hurt very much. Going to the restroom hurt terribly.

What really helped was removing the benign tumor in my colon. Some of the pain had been very bad intestinal cramping throughout my abdomen. I have most of my mobility back now. Occasionally, it will feel like there are hot, throbbing points in my pelvis for about three to six hours at a time, usually on the right side. Advil, a heating pad or ice pack, and lying very, very still help.

Also, since November, my periods have been dreadful. Terrible cramps like I’ve never had, and the week before and after my period, I’m very tender throughout my pelvis and it feels like I’ve thrown my lower back out. They never used to be this way.

After the laparoscopy, where everything was found normal, I had sharp, hot throbbing for several days over my right ovary again. The surgeon said she has no explanation except for perhaps a very uncommon form of interstitial cystitis, but I don’t have half of those symptoms. Sitting in a moving car and long walks cause a sharp ache on the right side of my pelvis, but it isn’t constant like it was for three months beforehand. The pelvic pain comes and goes, and it’s about one-third of its former intensity. I don’t know what would cause it to come back full force and constantly, but I hope it never does.

After seven months of poor health, I’m baffled by all my tests returning normal. If it’s not endometriosis, then what is it? If these tests come back normal, I’m not sure what other steps to take.

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40 Comments

  1. I had my diagnostic laparoscopy on Monday, I’m only 16 years old. I get agonising pain throughout my cycle, constant fatigue and many more problems… My consultant is amazing, she treated me with the most respect and belief, luckily it only took me about 2/3 years from first GP appointment to surgery.

    The laparoscopy came back clear, ‘everything is perfectly healthy and as we would expect’. Whilst I am glad I don’t have endo, it gives me so many questions, such as what are causing the pain and symptoms, that are the exact same as endo!!?
    I had an merina put in to help with the pain and bleeding. I am hoping that will help and cure me of this agony.

    Any advice or help I could get, I would be grateful!
    I hope all you ladies get the care and treatment that you need and have a right to.

  2. I’m going through the Sam’s exact thing! Doctor’s dont know what it is! I’ve had two larpiscopy surgeries and they haven’t found anything.

  3. What’s crazy is I’m experiencing similar debilitating pain, and I’m only 16. Getting extremely stabbing pains all over my pelvis and abdomen at random times of the month. It happens in a instant, usually at class and I’m just bent over the table trying to go though the pain. A week before I bleed I get sick – nausea, sore throat, weak, even more stressed than I’m already am, and extreme bloating. The bloating is horrid. One moment I’m fine, a minute later i have to adjust my belt by 4 – 5 buckles and try not go into fetal position on the spot. I bleed heavily for 5 days which is fine, but the added pain and bloating is debilitating. Each year as I get older, the worse the cramps get. Endometriosis doesn’t run in the family, and I’m certainly not getting opened up and told things are fine when I’m an adult.
    All I can do is find a pain management through my local gp. They have seen my very pale-and-in-pain look on my face and prescribed tablets that don’t do a thing. Just have to keep trying. Not going to get extremely serious until I’m sexually active.

    Also I have Type 1 Diabetes, so the mix of the pain and management during periods go crazy. Hormones effects blood glucose levels in which makes me feel even worse, and the pain gets worse.
    I reckon it’s just painful periods but if it gets any worse as an adult, things need to get checked out.

    There needs to be more research into women’s bodies. All the doctors will just diagnose you with endo if displaying the symptoms, but a lot of mysterious things can present the same symptoms.

    I’m really sorry you all experience these issues. But just keep going, don’t give up just yet. Wouldn’t wish it on anyone.

  4. Hi all my husband and i was trying to conceive, went to fertility specialist in 2016 mentioned my extreme pain on first and second day of period sometimes miss work on those days unless it falls over a weekend. (actually pray that it falls over a weekend so i dont get into trouble at work for absenteeism) Anyway specialist did laperoscopy, histroscopy and biopsy… Found everything was 100% and no endometriosis. Im baffled, confused, frustrated and still not pregnant am now 42 years old. Strongs to all ladies hope and wish everyone here find answers.

  5. Same here, I had a laparoscopy procedure done to see if I had endometriosis to explain some of the pain I was having during my period. I was also having prolonged periods that would last anywhere from two weeks to over a month. I’ve spent 2 weeks just laying in bed before. I would also get cramps up to a week before bleeding and a week after. I didn’t have endometriosis I do have a fibroid the size of a tennis ball hanging out on my outer uterine lining but they don’t think that’s causing the pain.

    During laparoscopy I had my Nexplanon taken out and an IUD (Mirena) put in. It hasn’t gotten rid of the problem but has made it more bearable. My periods are lighter I only have cramps a day or two before the period, the period cramps are still painful but they’re way more manageable. I’m hoping that the IUD will stop my periods altogether.

    The funny thing is the Nexplanon was causing a lot of the problems. I had dramatic weight gain, I was depressed, the prolonged periods, etc. I had Nexplanon three years before (it was great one of the best bc I ever had but I did still have cramping and fatigue) and then got it again after the three years was up. My obgyn said that it’s a common misconception just because a birth control works once that it will keep on working the same way. My guess is because our bodies are constantly changing as well as the amounts of hormones our body produces.

    I’m happy the IUD seems to be working so far but if this is a one-time thing I’m close to just getting my uterus out. I don’t think I’m having kids and I’m honestly tired of my periods making me feel miserable.

  6. Wow, I have just read all the comments and messages on here to see that it sounds like a very common problem we woman are facing (along with everything else we have to go through).

    It is nice to know it is not just me. I had a laparoscopy last week and came back all clear. Feeling in a lot of pain even as I write this which I really thought that lapar would sort it out.

    The pain is extremely more painful during my period and let’s not mention Sex…..!!!

    I was half hoping and felt the same frustration and annoyance as a lot of you woman on here when i got told by the consultant it was all OK and clear and to go for chronic pain therapy if the pain continues!

  7. Have had YEARS of servere pain with periods, specifically the first day or two. I know the exact day I ovulate as well. Enough pain to not be able to work or do much of anything. No BC or medication has helped- only causes migraines. Just had my laproscopic surgery to finally see if it was endometriosis , and the doctor said everything looked perfect. So beyond frustrated and don’t know where else to go with this pain.

  8. I actually cried when I read this. Been going through the exact same thing. So nice to know it’s not just me.

  9. I’m going on 5 years with this same pain you are describing. It began after my cycle returned after having my first daughyer. Never experienced anything like it before. I also thought it was endo and so did my doctors. We did the lap last year and nothing. I went on bc for the first time and it got rid of the sharpness of the pain and cramping, but it was still lingering there. When I got pregnant the pain actually disappeared until my cycle returned. I just stopped bc to see how I’d feel and the pain is worse. Idk what to do anymore. My doctor is baffled. I don’t want to stay on bc forever. I just want answers.

    1. I had 2 laparoscopic exploratory surgeries, one in 2010 and one in 2012 to see why, starting at age 35 after my second child was born, and after a tubal, my periods had become debilitating with back and abdominal pain and leg weakness. Each time was told- nothing! You’re clear! ??‍♀️??‍♀️??‍♀️ Deal with it! Good luck! I did not want to accept that but then other life problems increased and this issue had to be backburnered and every 21 days I would suffer a great deal for three days, for another 6 years. Finally I decided to take care of myself and went to a fourth doctor. She said I should not be having this pain. Since my surgeries were clear she guessed it was adenomyosis and recommended a hysterectomy since I was now 44 and done having children. It took months but I was finally able to arrange to take the time off work to have it done. Guess what – I DID have endometriosis, on my left ovary, Fallopian tube and ureter. While I’m glad she removed it and I should be cured now that my uterus is gone, I am so pissed that they missed it!! I believed I did NOT have endo but I did. Perhaps you do too. The recovery from the hysterectomy has not been too bad. My ovaries were left and I have ovulated since the surgery and felt something but did not feel the burning pain and discomfort I always felt before.

    2. Omg! You just described me to a T!. My pain has been so bad since having my son 12 months ago. I’m bed ridden for 3 days. I can’t move, I can hardly lift myself let alone lift my son and doctors have no idea what it is. I swear contractions did not feel this bad. I’m at my wits ends, I also don’t wan to take birth control – it doesn’t agree with me.

  10. Hi! So glad to see the recent comments as I was starting to feel crazy! I am 34,
    I was on BC pill from age 16-29 consistently, no issues normal periods little pain during that time. 2 mo after stopping the pill I got pregnant how lost it at about 7-8 weeks. My periods started to become irregular & more painful after that. Multiple unltrasounds were normal. 2 years ago pain during intercourse began. during my annual GYN decided to run all blood work, prolactin level was very high. I had an MRI that ruled out a pituitary tumor, GYN referred me to endocrinologist who happened to be at a fertility clinic. After meeting with her she was pretty convinced I had endometriosis & we decided to do a round of IVF. We had 3 healthy viable embryos, 2 transfers did not take, last one did but hcg went down after a week.
    I decided to switch GYN and waited 6 months for an appt with “the best” in my area. Laparoscopy 4/11/18 normal, dr actually said everything looked perfect& we should “get ready to conceive”….. I’m devastated as I put all my hope in finding out what was wrong with me. Haven’t had sex with my husband in 5 mo due to the pain….how does she think we are going to conceive????
    Lying on the floor crying out in pelvic pain during my period, debilitating migraines after isn’t normal but I have lived with it this long BUT to blow off the pain during sex as it’s in my head has devastated me!
    Any feedback would be greatly appreciated!

    1. Hello! I have been sick for years! Finally at age 22 I went to the doctor I couldnt handle the pain no more. He diagnosed me with Endometriosis by my symptoms and family history (my aunt had it). He put me on that Lupron shot for 6 months. It helped alot though I did have alot hot flashes. Once the 6 months was over and my period came back and body got the hormones back I got pregnant. (before the Lupron I couldnt get pregnant). So now I have three sons and my youngest is 5. Three years ago I had to have pre cancer cells remove off my cervix. I was 30 3 years ago so for 8 years I had believed I had endometriosis. I was done having kids and my body was getting back to normal and the pain and all the symptms were getting bad again. So the doctor did a laparscopic surgery when he put me under to remove the pre cancer cells to confirm if I had it and to help me. He than told me no I didnt have it, Nothing was seen. So now fast forward to now 3 years later. My pain is the worse its ever been. I have horrible pain all the time. I hate sex. The diarrhea is so bad and makes me so sick its not just before and during my period no more its all the time. I am exhausted and sick all the time! I finally go to another doctor and she refers me to another place. I just had my appointment and they dont want to do another laparoscopy but tell me they cant 100% say I have it but with my history they think I do. They explained to me how just because I had a laparoscopic done and it didnt see it dont mean I dont have it. So many times they have not seen it and than when they gone to do a hysterectomy the person was filled with it. So now they are putting me back on the lupron shot for 6 months. But what happens after! The pain will just come back the sickness the diarrhea and everything. No one wants to do a hysterectomy because I am only 33.

    1. Have you had exploratory laparoscopic surgery? My doctor does robotic laparoscopic surgery and found my endo when two other surgeons in past years did not.

  11. Hello! Maybe what I’m learning can help someone else.
    Dealing with similar situation after 10 yes pain getting progressively worse. Finally in Oct got lapo – was negative. Dr suggested that I could have pelvic congestion syndrome. Was sent to do a venogram w contrast and referred to women’s physical therapy. It was hard to wrap my mind around new diagnosis but the more I learned seemed plausible plus it’s easy to fix. So I was hopeful again. After consultation w Dr that does the vein immolization he sd there are some problematic veins that are enlarged but a a 6cm so it’s not decimate that this is cause of my pain (10 and above is sure thing). So I have procedure sched for 2/19 where he’ll test & immbolize if necessary. Interestingly, physical therapist found the spot that causes pain during sex in vaginal canal underneath bladder that has different tissue. I was diagnosed with IC a year ago (urgency, inflammation and slight bladder pain which I could feel after lidocaine cream inserted before sex). My gyno was rough & impatient trying to find area and dismissed issue so I’m switching to a urogynologist doc. Hopefully I’ll have real progress by summer. Could also be IC, scar tissue or possibly microscopic endometriosis. Fingers crossed.

  12. It’s nice to know I’m not the only 1 out there that’s having this problem, mine has been going on for 2 year and only had my diagnosis lap yesterday and came back normal. I really through I was going to get some answer and were going to be able to manage this. But now I at a loses where do I go from here? I’ve got 3 kids my own business and I just have to carry on I can’t keep living with this pain.

  13. I have the exact same. Just had my laparoscopic surgery to find out there is magically nothing. I’m beyond frustrated.

    1. Same here. I’m 34, have suffered painful periods with massive clots since my mid teens, tried loads of contraceptive pills, and resorted to taking them back to back to avoid periods altogether. Had lap 5 days ago, no endo found. The period it generated is just awful, have taken paracetamol, ibuprofen and dihydrocodeine together and it hasn’t touched the cramps. I need answers too. This pain can’t just be accepted.

  14. Did you ever figure this out?? I have had these exact same symptoms for 2.5 years now…I did an endoscopy, a colonoscopy and a laparoscopy and still the doctors found nothing…Having no diagnosis is a very hard pill to swallow.

  15. Ahh! Looking online for answers and I stumble on this post and relate so much it’s unbelievable! I’m 17 and for about 9 months I’ve had my period straight, used to stop for a week or so, not so much anymore. I was way too scared to see a doctor but once mum finally convinced me it’s like a fortnightly occurrence. I was referred to a gynaecologist who did a laparoscopy and hysteroscopy to find (hopefully) traces of PCOS or endometriosis. I’ve had right sided pain and crippling period pain THE ENTIRE TIME of these eight months and I’ve been on so many scripts and pills it’s crazy. Result of my operation- nothing! ‘Everything looks fine’
    This was back in September and since I’ve been back to the doctor every fortnight since!! I’ve had multiple blood tests to test for all sorts of things people believe it could be (mum is a nurse) and the only thing they’ve shown is my iron is low, obviously from so much blood loss! Recently I had the depo provera injection to stop the bleeding, which surprisingly worked for a week or so considering nothing (operation, the pill x3, progesterone, creams, scripts, nothing!) had worked. The bleeding started again the other day and I’ve had the worst kind of side effects from this needle! I have aching legs when I lye down to the point I can’t sleep, I wake up daily with rashes anywhere from my legs, arms, neck, face, I’m often lightheaded or dizzy, I’m over hungry or im never hungry, it’s all driving me insane!! I need answers! I’ve had these problems for 8/9 months now and I’ve been told it’s ‘perhaps stress’ so I’ve been sent to councilling ever second week which I believe has not helped and after 2 months last week she tells me she believes she doesn’t anymore think my pain has anything to do with stress!! Arg! I’m fed up, over it, tired, sick of being in pain and sick of being some kind of guinea pig for doctors!! Help!!

  16. I just had my diag lap yetserday and no endo was found I was relieved but very dissapointed I wish I had some kind of awnser because I’m lost now if its interstitial cystitus nothing I can do if its endemetriosis and she didint see it … well lets just day I wouldn’t get another lap unless I’m dying …. 🙁 oh well I guess I’m crazy ? That’s how my doctor made me feel but I know that pain is not normal and dispurania is not ok . Now what ?

  17. Did your surgeon checked if your tubes are open? I know I have endo there and it creates the same type of pain you describe. I heard from Dr. Cook, and bought his book. He really knows what he is talking about!
    As for pain management, I found that mindful breathing and emotional freedom technique (or tapping) greatly helped me (if you want more info on how to use EFT, I wrote a blog post on the subject). I try as much as possible to not take any painkillers as they don’t seem to work for me, and found that mindful breathing and EFT really did help me lower the pain. The great thing is that you don’t have to wait before they start to work for you, and they help you to be more in tune with your body.

  18. If you need an endo specialist I can recommend Andrew Cook, MD in Los Gatos, CA. I traveled to have him operate on me. During a previous local surgery my OB/GYN said I did not have endo — she ended up being very wrong. Dr. Cook specializes in other forms of pelvic pain as well and will do a free initial phone consult.

  19. Dr. Geraldine,
    Yes, there was a benign tumor in my colon. If there was a specialist in town, I would go see him or her.
    I’m going in for more blood tests related to liver function, so I will ask about being tested for PCOS. Thanks!

  20. Hello, and sorry that you have not been able to be provided with answers.
    Endo symptoms overlap with others, you really need to see an expert.
    You mention a tumour, was that a benign one? Could it overlap with deep infiltrating endo..searching behind the cul-de-sac,as suggested above might be a good idea.
    If PCOS is associated with it, some blood tests should help clarify, as it’s associated with insulin resistance. Other symptoms include infertility and hirsutism.
    Good luck!

    1. Is it possible for a doctor to just look right inside and not go deep enough to find the endo.?I’ve been told for over 15 years that o have endo and recently got fed up enough (at 30) to go back to my gyno and do more than just deal with it.they found nothing I got a page with about 4 pics on it and they wanted me to take a depo shot to put me in a “temp menopasal state ” to see if a hysterectomy will fix it. I politely declined
      I havnt been on birth control in almost 7 years and no pain meds. The pain is so bad they dont make a difference and just cause me more pain because of constipation….instantly! So I tough it out crying sleeping and rolling around like my consiousness is somewhere else and just breath. After my laproscopy i havnt been the same. Last year I was working out working and a solid get her done with almost a 6 pack now I barley get out of bed my periods are sometimes worse and way off sometimes I’ll have 2 in 30 days sometimes i have 1 in 45 days. It goes back and forth. I have serious lower back problems shooting pains in my chest and it’s all in a cycle with my period. I get so emotional which turns to rage the week before my period I have to constantly explaine that I can’t control my tone or attitude in my voice.

      It’s killing me … the worst part is how my family perceives what is going on with me because it wasn’t there so there mist be nothing wrong with me right?
      Maybe you can answer my question… if there’s no endo found in a laproscopy and it looks obvious in4 pictures it’s not there… did they not look everywhere. ..Could I still have endo? They said if they dont see it i dont have it.?

      1. I invite you and everyone else to come to Nancy’s nook on Facebook. It is a plethora of Endometriosis information and doctors who are skilled. These comments hurt me after having been in that group long enough to know that COUNTLESS women have been opened up , looked at and we’re told nothing was wrong only to go back with an ACTUAL specialist and have stage IV Endo. You guys are not all crazy. I promise you this.

  21. Well, the lab called. My liver levels are too high, and I get to see a gastroenterologist in two weeks. I guess it’s good they found something.

  22. Sarah and Nina, thank you so much for your input! I will definitely ask my doctor about Hashimoto’s and adenomyosis. If these blood tests come back normal (still waiting!), I will be sure to ask about anti-thyroid antibodies. Everyone has been such a help. I had no idea where to even start! Thanks again.

  23. It may also be adenomyosis. I had so much pain from my endometriosis so that a couple of years ago I underwent a hysterectomy and when my doctor examined my uterus, he saw that I had addenomyosis. It is very painful and can only be detected after a hysterectomy. And as Lisa writes small microscopic endometriosis lesions can be missed. The pain is unrelated to the size and amount of the lesions. Good luck and hope you get a diagnosis and feel better soon.

  24. Sounds like Hashimotos. If your doc didn’t test you for anti-thyroid antibodies when checking your thyroid levels, you should demand it. Mine and my sisters thyroid levels looked totally normal for 10 years. All the while I had swings between what I know was hyper-thyroid (losing tons of weight with a high appetite) and hypo-thyroid (gaining tons of weight with a crappy appetite and my mind feeling like a blank slate most of the time.). Seriously. Check to see if they ran tests for Hashimotos and don’t let them tell you that having a few antibodies is normal. It’s not. It indicates an autoimmune response to your own thyroid. Also, it totally sounds like PCOS which is super common dual diagnosis with Hashimotos. PCOS means you are low on progesterone and causes irregular periods and hypoglycemia and insulin resistance. Hope you find some answers!
    Sarah

  25. Lisa, that is a possibility. I know my surgeon has many years of experience, but I don’t think she is a specialist. I’ve tried to find one in Las Vegas, and I don’t believe there are any here. I’ll try to find one out of state if these are unresolved. Thank you!

    Angela, I have been tested for Celiac Disease, and I don’t have it.

    My colonoscopy was in mid-March of this year. They did find a benign tumor. My gastroenterologist said if I experienced similar symptoms: loss of bowel control, horrible intestinal cramps, lots of mucus in stool, that I should come see him again. I don’t have those symptoms, just mild IBS.

    My surgeon is not an endo specialist, but she is in the Association of Gynelogical Laparoscopists. She’s been practicing a long time. I have no idea if she checked behind the Cul de Sac. Thanks!

    1. This is a long shot since your blog was three years ago ….I’m experiencing the same thing. Severe pain no ultrasound,CT scan, xray blood test can explain.
      Have laparoscopy Monday and I feel hopeless Like they all think I’m crazy. Ive had this for a year.
      Only thing they’ve ever said was I’m backed up, probably a popped cyst, infection.
      How did yours turn out?
      Please help if you can.

      1. I can relate. How are you doing now?
        I’m working on getting a laproscopy scheduled. So worried that they aren’t going to find anything even though it seems impossible!
        Something’s gotta give, right?
        I hope you’ve found some answers for yourself! 🙂

  26. many, many women go to doctors who do not know where to look for endometriosis. if no endo is visible, they close up and say “it’s not endo”. it is possible that you DO have endo and the doctor you went to is insufficiently experienced. endo can be very easy to miss for the wrong doctor. a specialist will be more thorough and confirm all samples with pathology. an amateur will not….

  27. Have you ever been tested for Celiac Disease?

    When I was first reading this and your symptoms the first thing that comes to mind is that as well as bowel issues.

    When was your last colonoscopy when they found the cyst?

    The person that did the lap was he an Endo surgeon? Do you know if he checked behind the Cul de sac?

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