In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.
When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.
My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.
From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.
By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world. It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.
December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all. I was OK with that. I signed off on that.
When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results. I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.
At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.
Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.
Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.
There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.
My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.
i was diagnosed with endo as well and had a laparoscopy for it about 5 or 6 months ago. still have pains from the surgery and i feel it didnt really do anything. i was diagnosed with it after having my second son (which was a very big boy at 9 pounds and i had a very small hip spread) they said if he got any bigger id need a c-section but i fought it. because my first was a c–section and i didnt like it at all. tons and tons of scar tissue from both boys in the old c-section area and thats where my endo and adhesion pains usually are. except now its either in my belly button or below it since the surgery. since being diagnosed you get random pain. cant have sex at all. literally at all without pain. makes me feel bad for my husband because i just ended up giving up and not even wanting it anymore. right now im just on a special birth control but i might talk to my doctor again and see for other options. she was thinking maybe a hysterectomy but im not sure how i feel about that. but it sucks not being able to even just stretch without pains in my lower stomach or in the middle of my stomach.
I have the same. Off work right now due to the inability to handle the pain. Hospital sends me home after doing a CT saying they see nothing…very frustrating. Waiting to see the surgeon on May 2 – General Surgeon who is working with my gyno. Had hysterectomy in 2009 for endo, fibroids. `Then they took the right ovary in 2014 – it was stuck to the pelvic wall. While I hate the thought of others going through this, nice to know it isn`t all in my head. You feel like you are chasing your tail or nuts some days. This really helped!
I feel for you. I’m 38 was told ovarian cyst years ago by my old ob/gyn but in April I went in to get my tubes tied which is normally 30 mins at tops which after 3 hours my surgeon closed me up with nothing done but a bunch of undiagnosed endo lesions removed and the fact it’s everywhere including wrapped around my colon etc. So back on birth control and he said as bad as mine is he would advise no one try to remove it because the risk outweighs the outcome. He even removed endometriosis around my liver. Years of pain and missed by so many doctors.
My heart goes out to especially the author of this site. I understand something of what you have experienced but as horrific as my story is it pales in comparison with yours. It breaks my heart at age 67 to read of the suffering of such a beautiful young woman with her whole life before her. Perhaps it is best that I had only sons. The horror started for me when I began menses…unbearable, undescribable pain, headaches, nausea and vomiting constantly, loose stools, cramping of bowels as well as pelvis, shivering, overheating, fever, needless to say no appetite, no relief and no sympathy or treatment from my family, my mother…she just gave me a little Whiskey and probably aspirin, no doctor visit…was it affordability? I have wondered if there is a connection to her perhaps having taken DES to prevent miscarriage but she never admitted it. I also had many malformations in my body including tipped uterus, malformed kidneys and ureters, triple major scoliosis in my spine and other oddities. I also seem to produce a lot of adhesions and I do not know why. I also had terrible loss of blood with periods, could not leave the house and was of course anemic. That is all I can think of…curious that after the birth of my first son the pain subsided but not the blood loss. When I had a hysterectomy at age 50 the surgeon was stunned at the degree of Endo tissue and asked of my pain experience through life. I had a total hysterectomy. In 2010 I was implanted with pelvic mesh and a life of terrible pain began again. NEVER allow them to do this to you or anyone else. Read Medical Mesh News Desk, google Jane Akre to learn more. I have so much scar tissue the mesh can not be removed and will probably kill me. I no longer trust doctors as a rule. Also I and others with whom I have discussed this have come to the conclusion that after one reaches age 60 or so there is a tendency for the medical establishment, at least in the USA, to just let you die. Shocking but consider the evidence. God Bless,
Also, one more question (hopefully). Was Dr. Leyland the one that did your hysterectomy? How is his bedside manners? Did you have day surgery?
Yes Dr. Leyland did my hysterectomy. I am not a huge fan of him personally but he is a good surgeon. I don’t think he is a bad person I think there is only so much he can do when dealing with patients with Endo especially those with complicated cases. I will not lie saying that I had the hysterectomy because I didn’t want to go through all the same things over and over again just to be taken seriously. He did my first surgery in 2007 and my 3rd (hyster) 2014. I started to have bad rectal pain and urinary issues in 2009 and it took 5 yrs to get back into his office in order to be listened to. I actually wrote him a letter Dec 2013 because I was just so upset with the after care treatment I got. It mentally took so much of a toll on me that is when I said it was enough, I can’t go through this again. This shouldn’t be a way to go if you have endo and I know that it doesn’t cure Endo but it was the choice I made for my own body. I had surgery at 8am and didn’t leave until the next day around noon. I was on a catheter for 11 days following surgery because I could not pee.
Hope that helps some
Thanks, are you happy with the results of the hysterectomy? Was it done via lap or abdomen? If these are too personal of questions and you would feel more comfortable emailing me off list my email address is firstname.lastname@example.org …..
It is never too personal. I speak out to help others and the more information that can help someone else the better.
I had my hyster via lap. I had a big portion of my vagina removed due to rectovaginal recurrence. I had my pelvic lining removed as well due to ongoing deep infiltrating endo and to remove the embedded ovary that was sitting on top and tangling both my ureters. I had a bladder resection again as well as endo removed off the sigmoid colon. I ended up having multiple small fibroids which I never knew I had as well as a cervical polyp removed.
After the surgery I could not urinate so was stuck on a cath for 11 days post op. Ended up with two bacterial infections from it but thankfully no other real complications.
In August (3 months after the hyst) I lost all feeling in both of my arms and they were swollen from Edema. Tests were not done right away I had to wait 3 months so nothing came up and they are still unsure of what caused it. So I am not sure if that was from my surgery or not. I know I am still recovering from frozen shoulder which possibly is from the surgery and how you are lying down during surgery for extended periods of time.
I am 1.5 yrs post op and I feel 100% better from the endo itself but still have bowel and bladder issues like I expected would happen. I am currently having blood in my urine then it disappears so its possible I might have kidney stones but small enough not to hurt. I take cymbalta/flexeril and that helps my bladder and bowel spasms which are most likely from Pelvic floor dysfunction.
It has not been a pleasant ride I can tell you that but I feel a lot better at this moment than I have since my hyster.
Hope that helps
Yes I used to be a patient at Wasser for my Jaw, Endo and fibro. The problem with Wasser is that they don’t really tell you about the options that you have there. I heard over the weekend that they have CBT classes for those who suffer from Pelvic pain, but I also know that they do have Nerve block injection options as well. I find that the time it took to get in, see the doctor and explain to the doctor took so long and I always left feeling like nothing got accomplished. Maybe it was me I really don’t know.
I am a patient of Dr Leyland in Hamilton but there are many many great specialists in toronto. Here is the TENC (Toronto Endometriosis Network of Canada) where you will find a list of the best Endo surgeons. http://endometriosisnetwork.com/information/finding-a-specialist-3/
You can also go here to the Facebook Group https://www.facebook.com/groups/TheEndoNetwork/ they also have a support group every second Thursday of the month. It is a great resource for anyone that lives in Canada especially Toronto.
As for the urinary pain I have pain before and during and I leak. There is a condition called interstitial cystitis which goes hand in hand with endo. I had Endo all over my bladder and ureters so I think mine is due to that as well as adhesions from the surgery.
Feel free to to contact me at any time. I am on Twitter and my handle is @EndEndoForever
CBT classes? Really? Oh god that’s scary, I need this to get treated down there, not in my head, this is so depressing. I already do mediation and tai chi, good grief. I had a feeling about this, I am so sick of this, I feel like I’m banging my head against the wall. My BIGGEST fear is that I will always be in this pain. (I know you know what I am saying). I really think that the gynaecologist that took my ovary out in February really messed me up in there and now know one wants to touch me. I even asked my GP if that could be possible and he said YES ?… he has and the gynecological unit at Sunnybrook Hospital have asked her for my operative report numerous times and she has ignored their requests. So instead of looking into it themselves they pawned me off to the pain clinic. This just isn’t right. I wonder how many other women are suffering like this in Canada? Something should be done about this, it’s so unfair and inhuman. Sorry for the rant. And thank you so much for the information and links, I will look into them right now ?
CBT is actually good to help deal with the emotional aspect. A lot of women ultimately think no way at first because in their mind they are thinking that they are not mental and they don’t need that and just surgery. The pain from endo as well as lack of medical care and support can bring on severe depression and anxiety and talking to someone at least about the pain and your journey could help deal with the mental aspect. You just have to be ready is all.
I made an appointment with my GP today for Thursday, I have heard of Dr
Leyland in doing my own research earlier just yesterday on the internet, I’m going to request that my Dr send me a referral to see him. I don’t care if I have to travel to another city if it means that I will get good care. I will keep you updated ?
Again, thanks for your time.
Good luck 🙂 Please post and let me know how it went
Hello Angela and thanks for replying to my call of help ?…
You mentioned that you also went to the Wasser Clinic. May I ask, are you still with them? Were they helpful? What will my first visit be like?
Do you have a good gynaecologists that you are currently seeing? Or do you know of any good ones in the Toronto area?
Unfortunately I was really holding hope the they have the barriers here as there is no way I can afford to go to the States to get it done ?
You say that you get bladder pain, I’m assuming it happens when you urinate. With me it’s different from anything I’ve read, mine hurts only afterwards, not every time it happens but quite often to put me in misery for about 2hrs straight, I can’t even sit when its happening. Do you have any idea what the heck it is? Is this how it happens to you?
Again, thanks for taking your time out of life and helping us ladies. Xoxo
When you wrote that I felt that I was writing as everything you have written is what I have experienced. I have heard of the adhesion Barrier but I too don’t think they do that in Canada that I have heard of but Dr. Sinervo in Georgia is an Endo specialist and I think he uses this. Surgery with him is not covered by ohip but I have talked to many women that have gone to see him. He works out of the CEC.
Lisa- I already had the surgery in May. I had bowel and urinary issues since I was 15 so I was expecting the same after so I didn’t put my hopes up so high that it would go away magically. I can now tell the difference between uterine and bowel pain after 26 yrs and I have no endo pain but that doesn’t mean I won’t later down the road. I opted out of HRT and other than the bowel and bladder issues I am feeling better. Who did your surgery? Do you want to know of a good surgeon in your area?
Lia- Sounds like you are having a tough go and I am sorry. It does sound possible that you have endo. In layman terms to explain endo it is when abnormal cells go outside the uterus and cause lesions/Also referred to by many as bleeding internally but not dying, or having 1000 bee stings inside when describing to someone with endo. There is no way to see it on imagery unless there is an endometrioma (Blood filled cyst) Please reach out if you have anymore questions
Hello. I have adhesions that are really destroying every aspect of my life. I have pain in my bowels, bladder, vagina and uterus. In February I had a complex cyst on my left ovary that was causing tremendous pain. The Dr’s decided to do the wait and see approach before going in and taking it out. When the gynecologist finally did the surgery it took two hrs longer because I was full of adhesions, she said she had a hard time even finding my ovary because it was wrapped around the back of my uterus and stuck onto my bowels. She also did a D&C because I had thickened uterine wall (1.9cm) postmenopausal. She did a biopsy and the results were hyperplasia.
I am now 7mths post surgery and my life ever since has been a living nightmare. I still have pain in my left side and as I stated earlier, it’s sore every where in my pelvis. I’ve been to the Er a few times, saw different gynaecologists, and they are doing nothing for me except throwing meds at me. The pain is so bad now and because of it I am basically a coach potato. I have an amazing husband and 11 yr old son and now they have to suffer along side with me. The pain gets to me, my poor son has seen it through my tears and meltdowns. I sometimes wish I would just die because it gets to be too much. I am on the waiting list for the Wasser clinic but they said I won’t even get into seeing them until Dec – Feb.
I have read a lot about adhesion barriers working but I don’t know where I can find a Dr that is able to do that type of surgery or if it’s even available in Canada. I asked my family doctor about it and he hasn’t even heard about it.
If you or anyone here reading this could help me out in any way I would be so grateful.
Hi. I do not want to bother you because I can tell you have plenty of problems as it is and I wish you the best of luck with that, hope you’ll come out as healthy as you can be soon enough. The thing is I’m not a native English speaker, so I don’t understand all the medical terms that much, but for about 2 years sex has been agonizingly painful for me and no one seems to know why or be able to cure it. So when looking for options I came across this article and I’m wondering whether I might have this medical condition or not, could you/anyone please try to simply explain what it is exactly and what causes it so I can know if it’s possible that this is happening to me as well. Thank you so much. Best wishes.
I too have endometriosis and adhesions. Although I did not find this out until I went in for a routine laproscopic ovarian cyst removal and came out having been given a hysterectomy without my consent. If you can at all help it, don’t get a hysterectomy. It will make the adhesions worse. I never had any problems with pain surrounding urination or bowel movements outside of my period week until after my surgery. Now I have it every day, all day. Life is so much worse with the hysterectomy. Plus, I wasn’t given a choice and I was gearing up to start a family with my husband, now we can’t.
I am searching surgery for adhesion, because I am thinking to have one. If you decide to have 3rd one. Maybe you can ask your doctor about this medicine.
I have heard of that but I don’t think that they do that where I live but it is something I have been meaning to research and have heard little tidbits about here. Thanks for bringing it up again so I can look into it.
Had you doctor applied Seprafilm on you in the 2nd surgery? It doesn’t guarantee no adhesion form but it can reduce.
Yes I have not been able to go to clear passage but I know it works.
I use the Yamuna balls to roll on and break up scar tissue its been very effective.
Did you manage to find out any methods to feel better from the adhesions?
I feel silly even making a suggestion just knowing what *I* went trhough and I’m sure you’ve exhausted everything. In my humble opinion it sounds like you’ve had some crappy surgeons. I finally found Dr.Roseann Maikis in Nashville who operates with a giant robot (Think final scene in Alien lol) but this thing can peel a grape. She specializes in the worst endo and finally freed me of my nightmare. There is a video of her using this on the internet if you goodle her….Just my meger offering….Good Luck, sister.