Endo infused in bowel

[Trefriw66]

My daughter has severe Endo which has infused with bowel and awaiting mri. What and how many operations have people had with similar experience. Thank you

[applebird]

I was diagnosed with severe endo at 25 after diagnostic laparoscopy, had laser in second lap about 4 months after that (didn't do much). Then diagnosed with concurrent adenomyosis and infiltration into bowel circa 27, had another investigation, mri and then excision surgery.

If your daughter is at the mri stage it is likely they will be able to plan sufficiently with the info from this to have everything done in the one operation - make sure it is excision surgery (endo centre, endo specialist) for the best possible outcome. If she goes on something like pill or prostap for 6 months post surgery it can aid healing and shrink any residual growth.

For some people endo can recur, for others they have one operation and they never need further treatment. I haven't known anyone to have more than 10-11 laps, for me I have had 4, plus two other abdominal surgeries and potentially could have another caesarean so they have said the only option surgically for endo now would be hysterectomy (the more they operate the more scar tissue/potential problems etc so they draw the line eventually).

Hopefully the one operation should be enough if they have a multidisciplinary team involved. x

[Trefriw66 in reply to applebird]

Thank you so much applebird...my daughter had a miscarriage then lost her 19 day old baby son a year and a half ago due to placenta problems...she has no children I hope she is still able to have a family and Endo doesn’t impact on this but will know more after mri...your reply is much appreciated x

[applebird in reply to Trefriw66]

Miscarriage is sadly very common with endo; I had two and most women I know with endo have as well. How awful for you all to have lost her son. So sorry. You can only take it one day at a time, have faith, the surgery can make a big difference to quality of life and improve fertility as too. I hope everything goes well x

[BlueTit98]

Hi,

I have been given a similar outcome in my last 3 hour laparoscopy - severe endo in the pouch of Douglas so it's fusing between my womb/rectum/colon. I have my MRI this Sunday and am seeing my surgeon soon to discuss everything and I know I need a colonoscopy then two days 'bowel prep' after which a further laparoscopy (hopefully not Caesarian) with my surgeon and the colorectal surgeon to remove what they can. It's good that they are trying to make a plan before going in, push as much as you can for them to investigate as much as possible before surgery and to plan for the colorectal surgeon to be there if required!

Wishing you and your daughter all the best!

[Trefriw66 in reply to BlueTit98]

Thank you for your advice...she will be under St Mary’s Manchester who have brilliant gynaecology drs some world renown so I’m thankful for that. Keep us informed how you’re doing BluTit98...can I ask how old you are...my daughters 29. I think hers is in POD too.

[BlueTit98 in reply to Trefriw66]

That's brilliant! I'm with the Hampshire hospital in Basingstoke and my surgeon is lovely, I do trust him. Of course, i'm 27 so similar! Thank you keep me informed too x

[Trefriw66 in reply to BlueTit98]

Will do x

[lou840]

Hi, I have severe stage4 endo of bowels also affecting other areas like pouch of douglas. I have only had a laparoscopy for diagnosos and no future treatment yet. Had mri to distinguish how deep its gone into the bowels. Will be going on Zoladex to bring on early meonpause for 6 months or so to stall the endo from spreading until we decide to try for a baby, and then i will have a hysterectomy .

To help your daughter, come up with a list of questions you can both ask her specialist so you can ensure she can make a clear choice on best treatment for her based on her age and future life wants x

[Trefriw66 in reply to lou840]

I believe her gynaecologists said see what MRI shows before she tries for pregnancy again....he is Dr Osagie and I believe he is a very sought after dr so were very lucky. How old are you lou840. X

[Pilatesheather]

First off, having a hysterectomy will not cure endometriosis. If a doctor has told you that, find another one. Second, Zoladex will put you into early menopause, as you noted, and they say it is reversible when you come off it, but there are instances when women did not have a return of ovarian function. Third, there is absolutely no evidence that shows Zoladex stops the growth of the endometriosis. In fact, there is at least one case study whose subject was a woman with an endometriotic nodule on her bowel, and after a course of Zoladex, it actually grew larger to penetrate the bowel wall, and she ended up needing a bowel resection.

Find an endometriosis excision specialist surgeon. S/he will give you the best hope of having children, preserving or enhancing your fertility by removing all of the endometriosis. Start by looking for a BSGE endometriosis centre near you, look on Facebook sites such as Nancy’s Nook and Endometriosis to learn more about endometriosis and it’s proper treatment.

Best of luck to you!

[applebird in reply to Pilatesheather]

Agree hysterectomy not guaranteed cure, if they leave the ovaries definitely not! I'm curious, if ovaries are removed along with womb and excision of as much as they can see would that then not remove the hormonal stimulation for any small remaining deposits? Or do you mean if you have severe endo and lots of adhesions from it/surgical intervention that benefit from hysterectomy would be less pronounced?

Any time I've been pregnant/been on prostap it has really helped, so I was feeling quite hopeful that hysterectomy (and getting rid of oestrogen supply from ovaries) would give me some sort of resolution.

[Pilatesheather in reply to applebird]

My apologies if I can off as harsh. I am just so tired of hearing doctors give their patients incorrect and harmful information. I have/had stage 4 endo. I had an incomplete excision surgery in which endometriosis was left in my rectovaginal space, and I had a endometriotic nodule that was left behind. The surgeon who was a “pelvic reconstruction specialist” (here in the US that means 4 years university, plus 4 years medical school, an additional 2-4 year residency in on/gyn, and finally a 2-4 year fellowship) did my surgery. I also had endo fusing my uterus to my bladder, growing up along my left ureter, and an endomtrioma on my left ovary. She knowingly left behind the endo around my bowel (my vagina nd rectum were fused together; she said it was too dangerous). She told me I could go to a colorectal surgeon, but I could end up with a colostomy or a fistula. She said my only option was to take Zoladex.

Here I am 16 months later, having had bowel symptoms and pain ongoing since before the first surgery, and some pain that had worsened. I saw a “Nook” doctor who happens to be here in my home city but out of network (like private pay outside of NHS). I finally had my second Laparoscopic excision surgery and he got all of it. Some that surgeon #1 missed (on my bladder), and some that had grown back because I she did not skillfully excise (I had an endometrioma on each ovary this time). During the time since my last surgery I have been on continuous birth control (which supposedly supresses endometriosis—nope!)

My instincts were right after my post op appointment with my first surgeon—run the other way and go to the expert excision specialist. I am so glad I did.

I’m still in pain from the surgery itself, but I can tell things are better/different in my rectal area. Gone is the constant pressure. Gone is the painful sitting.

Hormonal treatments only mask the symptoms. That probably explains why you felt better on Zoladex and whilst pregnant. That does not mean, however, that your endo is not growing and spreading.

In answer to your question, I have read some expert opinions on total hysterectomy being an option for women with persistent pain or recurrent endo (who have also had expert excision), who are prepared to lose their fertility, or who also have Adenomyosis. I’m 45 and done with babies, but I did not feel I had Adenomyosis so I opted to keep my uterus and ovaries. We shall see if that was a wise choice. If not, I can always go back later and have a hysterectomy.

Best of luck to you, too.

[applebird in reply to Pilatesheather]

Hi,

Yes I agree - you need to go to a specialist excision surgeon and be careful about who you opt for!

I had a diagnostic lap, then major laser (sounds like a dj...) both a waste of time with general gynae.

Had two excision surgeries (first more complicated than they thought so had to close me up, schedule mri and second op) - like yourself, everything stuck, nodule on bowel, had partial resection - I found the most benefit from excision too.

Also agree re. hormone treatments and their effectiveness - they don't cure - just dampen down the growth (particularly with aggressive disease), but taking something like that is preferable and essential really post surgery rather than doing nothing -- after surgery you have open tissue which is like a ploughed field ripe for endometrial cell implants and growth.

Having had 4 laps, my gall bladder removed and a caesarean I've had enough frankly.... I also have concurrent adenomyosis and am currently mostly bed/house bound due to pain. As far as I know if you have hysterectomy including removal of the ovaries it should sort things out - as without sufficient oestrogen stimulus endometrial cells do not grow.... that's why I was wondering when you'd said it wouldn't resolve things??

I'm hopeful I might have another child, but at this point (33) I'm not that sentimental about my reproductive system - as soon as it's possible I'm happy to bin it. x

[Trefriw66 in reply to Pilatesheather]

Thank you for taking the time to reply....I’ve heard my daughter talk of Nancy’s nook...she has her groups/forums and I’m on this one...so as to give her privacy but also important for me to understand it as her mum. That’s why is so helpful for me to hear your stories/advice. Much appreciated x

[Natalie-c]

Hi an MRI is definitely a good start in diagnosing but I had 5 laparoscopies before I finally got to a recognised centre where I had a total hysterectomy they said I would need a bowel resection and possibly a stoma but in the end the professor of bowel surgery works with just shaved the endo from my bowel. It’s just so important to make sure your daughter is referred to the right people. Do lots of research and be prepared to travel if you can. Hope she gets better soon x

[Trefriw66 in reply to Natalie-c]

Thank you Natalie...we are very fortunate to have a brilliant gynaecologist right on our doorstep who I believe people travel from all over to see...x

[Natalie-c in reply to Trefriw66]

Thats brilliant news half the battle won right there x

[Sweetyassi]

Hi,

Sorry to hear about your daughter suffering with endo.

I had bowel resection done in 2009, part of my bowel was removed as it was damaged. The endo was stuck to my bowels and was inside my bowels, stuck to my bladder and Inside my bladder, stuck to both my ovaries. I developed celiac disease. I’ve had numerous operations since then. My last operation was last year August and developed compartment syndrome in my right leg during surgery and had to have 4 emergency operations on my leg. I’m on a liquid diet because solid foods irritate and cause pains in my bowels. I think I have fibromyalgia now and will get it confirmed next week with my GP. No painkillers work for me, i’m in pain day and night, I can’t sleep, I can’t eat.

I really hope you’re daughter doesn’t end up like me. Everyone is different and reacts differently to medication and surgery. We are all here for you and your daughter if you need to talk.

Sweety.

[Trefriw66 in reply to Sweetyassi]

Thank you and I hope you start to feel better at some point 😢 poor you x

[Sweetyassi in reply to Trefriw66]

Thank you😊