Severe endo. Choice of ovary removal or bowel surgery

[Starry]

Had quite a shock when I went back to my surgeon this week. He confirmed my diagnosis was severe endometriosis. I had though it was mild to moderate.

He had warned me of the need for more surgery which I hadn't been keen on. I had started to brace myself for this bowel op after the sigmoidoscopy and bowel surgeon consult but it sounds scary. I said I knew about the risk of stoma and resection, I expressed my biggest fear as being the op being successful but still being worse or in pain as I am much worse since my first op which even didn't involve big treatment. Sex is now impossible im suffering severe fatigue and I have started to have bowel issues. He said though that the surgery would be more risky than expected because my bowel is actually distorted and tethered to my cervix. To date he has a clean sheet on stomas. He gave me another choice of zoladex injections plus tibilene to try to reduce pain and inflammation but that if successful that would then need to be followed by ovary removal oopherectomy. On asking his recommendation he said try the zoladex which surprised me.

Having found on a quick search risks of oopherectomy so far I know it's a rare endo treatment when all else fails and risks are shortened lifespan dementia heart failure and cancer on ovary removal so I am wondering if the risk of bowel resection and Tumor removal may not be the better bet !! Here is one of the photos of Dave my nodule and the tetherimg to the cervix.

Had anyone else been in this dilemma and what did you do?

[Hidden]

There are risks to all surgeries, thats how they are however if your fatigued all day and and pain without having these issues delays with you will only get worse.

oopherectomy will essentially put you through menopause, all those risks can be aided by taking HRT, avoid o-estrogen so the endo won't grow.

From my understanding you have a tumour on your ovary? If it is canceruous (which I assume it is) it needs to be removed or else it will spread. Ovarian cancer is known to be a fatal cancer because it doesn't tend to have any symptoms and once it is found it's in a late stage. So by avoiding this surgery if you have cancer your weighing a shortened lifespan on a fatal disease that can be treated now.

If the tumour isn't removed you will be put on chemotherapy and probably a menopause inducing drug since that's the treatment for ovarian cancer. And depending on the kind and or stage you may not be helping yourself with this line of treatment. Due to the location of this cancer too it can spread to the bowels as bladder.

Realistically the shortened lifespan really isn't anything to worry about since some people live longer than others. You might have a life expectancy of 100 years but than it'll turn into anywhere between 80-90. And if you do have cancer and don't remove the tumour you could die in the next few years from it spreading. Treat it when it's in an early stage not when it's late and more complex.

Another thing about the risks is how do you know they'll happen to you? There's a huge possibility you will be fine, you can avoid heart disease and heart attack with healthy exercise, 30 minutes everyday. A healthy heart can also prolonge your life. Dementia can be avoided too.

I'm sorry for being blunt but cancer is not a disease to play around with it is dangerous and fatal.

[Starry in reply to Hidden]

It's not cancer it's a benign recto vaginal endo tumor but it has attached my bowel to my cervix. My ovaries had a small endo cyst that adhered them to my peritoneum but that was treated in my diagnostic lap. Otherwise my ovaries themselved are ok so far as I know. I don't have lots of endo everywhere just this lump plus a few small bits on the pelvic side wall under both ovaries and a small bit on top of my bladder.

I was surprised when he recommended the zoladex oopherectomy route over the nodule excision though I was told it was risky and was wondering in what cases surgeons go for that route instead.

[Hidden in reply to Starry]

I am in this position and having the hysterectomy and bso in just over 2 weeks. I have a large rv nodule like yours with the same tethering to bowel but I also have extensive endo elsewhere and it has pretty much destroyed everything. I also have adenomyosis, hence the hysterectomy. The consultant has basically said that although it is possible to excise the rv nodule, it will leave scarring on the bowel. Leaving your ovaries in means a much higher chance of the endo coming back and further surgery being needed. There is then an issue with having more surgery on the bowel and this causing permanent damage. He said that he would only recommend the excision alone if I wanted more children.

at this point it might be worth considering the zoladex. It's not a commitment to anything and can give you pain relief. Please message me if you want to talk. X.

[Hidden in reply to Starry]

Did he tell you why he didn't remove the little bits? Those could wreck havoc on you if you if you don't go on hormonal treatment.

I'm assuming you have your uterus and have not had a hysterectomy and plan on having periods?

The uterus is attached to the cervix and during menstraution the blood flows out of the cervix by being attached to the bowel that can cause rectal bleeding, and severe pain as well as pain with intercourse.

If you were planning on getting preganunt and having a natural birth you could risk bowel damage not to mention the baby growing would be extremely painful.

I would go ahead with the bowel surgery.

The removal of your ovaries would be to just put you into menopause so you no longer have to keep taking zoladex, there's really no point in it if there's no cancer other than the fact that with them you with have cycles and the endo will grow (possibly come back) without hormonal treatment to prevent you from doing so.

The surgery from removing the module may be risky because of the location, since the cervix is so close to the bowel they would probably have to sell it up. Or if you went the route of no bag it could be risky because of infection. They might also be thinking about your pelvic floor since if the nodule is resting on it, the pelvic floor is supporting that or being weighed down by it and once it's removed you could suffer from a prolapse.

However the bowel surgery is a good route to go since bowel moments will be less painful (if you experience that) as well as intervourse or periods.

By making you menopausal I guess that they hope the endo won't grow and therefore won't bother you.

[GrittyReads]

Are you in the UK, and are you (have you?) been seen at a BSGE Clinic? They are NHS, scattered all over the country, and your GP should know to refer you to one if your Endo is particularly bad. They are specialist Endo clinics staffed by endo-specialist gynaes that only do Endo-type work - instead of being all-round Gynaes. Further, they work hand-in-hand with on-site endo-bowel / urinary specialists, who understand both sides of the skills. I would talk to the 'Endo UK' advisors - link at top of page to their website and phone and email contact details: they host this site and will be able to advise you, and especially on your nearest BSGE clinic. Also, check post on here by Lindle.

[Starry]

Thanks GrittyReads I am having my treatment at a BSGE centre. Thanks Hidden I think you're right its a worthwhile experiment and it buys me some valuable head space to adjust to reality of the severe diagnosis. And I agreed for that reason. At the moment it's positioned as either or. Guess that may change as my symptoms are evolving. I may pm you its so helpful to know someone who is in the same sort of position. Thanks x x x

[Hidden in reply to Starry]

I had 5 months of decapeptyl last year (similar to zoladex) and although long term it didn't work for me, I did get a couple of months with reduced pain and very little bleeding, something that I desperately needed at the time. I had become very stressed and anxious and wasn't in a position to make a sensible decision about anything. More than anything, I think I needed time to grieve. I had gone from being told it was IBS, to being told it was endo but it was easily treatable, to suddenly being referred to a hospital 30 miles away for major life changing surgery. Even though I was pretty unwell anyway, it was still a really hard adjustment to accept that I was a sick person with a chronic illness and it wasn't going to get better any time soon.

I'm on prostap now (without HRT ugh) to shrink the endo growths before the surgery. They are going to excise the RV nodule as well as taking out my ovaries and there has never been any suggestion that they would leave it in situ, so it might be worth asking your surgeon what his reasoning is for leaving it in. They've told me that around 10% of these surgeries require a bowel resection and stoma, not because the surgery has gone wrong but because it's the safest way to remove the disease from the bowel - when they shave the nodule away it thins out the bowel wall and if this is deep or over a large area there is a risk of the bowel then bursting at the weak point, so the resection is the better option. I would imagine the reason they're not making a fuss about the other areas of endo is because they are pretty straightforward to excise. If you have RV endo it's automatically classed as severe because it's difficult and risky to remove it due to the bowel involvement but sadly it's also really painful :/

[Starry]

Hi Hidden no he didn't mention the other bits. I am on progestin with the mirena so I guess he thinks they aren't significant enough to be causing the problem. I'm not planning children just not keen on unbalancing everything with the oopherectomy.