Stage 4 endo with adynomyosis- sub hysterectomy, please advise on it

[Ayesfreen]

Hi everyone. I have been diagnosed of endometriosis via laparoscopy in 2018. I never had any issue other than couple of days of painful period until September 2022, when I started experience excruciating pain during my period (7 to 10 days) and pain on my ovaries and lower back along with constant bloatiness and constipation throughout the whole month.

I had an ultrasound scan, CTC scan and an MRI scan which showed the severity of my endometriosis: stage 4 (ovaries, bowel, small intestine and urethra). I have been booked for a surgery end of this month to remove endometriosis. My consultant said there is a chance I may have stoma bag for 3 months afterwards. Was anyone told about this and did you have stoma bag?

What I didn't expect was the adynomyosis.

I have 1 child (13 year old) and I do not wish to have anymore children so my consultant advised me go for sub hysterectomy (removing uterus). But I am not sure about this. I am 35 and beleive that I am too young for it. Also, it means I will never be able to conceive again in future (although I am done with family planning).

Please ladies advise me on stoma bag if you had to have one after endometriosis removal . Also, is 35 too young for hysterectomy?

[Highlandgoat]

hello Ayesfreen

Sorry to tear what you’re going through, they are big decisions.

I’m 5 weeks after a full hysterectomy. I was advised I’d have a stoma, I had absolutely no bowel symptoms so had asked if they could possibly scrap the endo from the two sections I had it on. Thankfully they could so I didn’t need a stoma in the end. It does mean that I do have some endo left on the bowel but Thankfully still no bowel symptoms. If I was to then to face surgery I’d be looking at 9months with a stoma.

My biggest fear was the stoma bag, I would recommend seeing a stoma nurse. They are very supportive and can properly advise you on how it all works if you do have one. But also talk to the bowel surgeon, I had an honest conversation with them about my feeling and symptoms and we made the decision together.

Sorry, I can’t comment on if you’re too young for the hysterectomy.

Good luck on your journey and I hope you are pain free soon.

[Rainbow2468]

Hi I'm 49 and I was nearly bullied into having a hysterectomy, my advice is not to have one, there are many reasons why a hysterectomy isn't a great idea. Sorry your going through such a hard time. Sending you a big hug x

[justmai]

can’t help with stoma when my endo was first diagnosed it was a relatively new thing not many treatments and it wasn’t staged however I had a total hysterectomy aged 30 25 years on not looked back. I could never have children anyway I was told so it didn’t mKe any difference to me. Best decision I ever made. I lost most of my twenties due to endo pain and heavy bleeding. It gave me my life back.

[Avourneen]

Hi Ayesfreen,

This is decision you really need to make for yourself but I can tell you my experience and see if it helps. I have had endo for years but it was only discovered when I was in my late thirties. I had a bad quality scan and it was wrong diagnosed as stage 2 and ablated. This meeant it came bag very badly within a couple of years. I was still trying for a babay at this point so I had all the endo removed it was pretty similar to yours stage for and through the bowel. The gyane suggested not having a hysterectomy as he thought I could have a chance with embryos. So I didn't get the hysterectomy, turns out I have adenomysiosi too so could not carry embryos to full term. Now the endo has come back gagin very badly (3 years on) I have seen 4 specialists and they have all said my endo is too bad to do a hysterectomy or remove it from my bowel without a permanent stoma and that even that might be very dangerous.

Now I really wish I had had the hyterectomy while I could, I currently have to take a high dose of progesterone to stop me bleeding which increases the risk of uterine and ovarian cancer and I believe that if I had had a full hysterectomy the endo would not have come back.The chances of it reurning are really high if you keep your ovaries, but if you go for a totaly hysterectomy much lower.

My sister has endo too and had a totaly hysterectomy at 35 she found the early menopause pretty stressful but now she is clear of endo and has never had it come back whereas mine has just grown and grown and now I can't get a hysterectomy as everything is too badly scarred and stuck together.

So there are consequences of having the hysterectomy and consequences to not having it. I'm sure some people will have had bad experiences with having one too so see what other people saybut I think you are doing the right thing in asking women who have been through it rather than depending only on your doctors predictions. I wish you lots of luck whichever way you decide to go and I'm sorry that you have this horrible condition that we all share. I hope whatever you have done really helps.

[Ayesfreen]

Thank you so much everyone for replying and sharing your experience. I am very grateful I contacted my surgeon yesterday and told him about my concern for stoma bag. He has re-assured me that it is unlikely that I would need it. But still won't stop me from worrying.

I still haven't decided about hysterectomy, I forgot to mention this will not be full hysterectomy, they would remove uterus and fallopian tube only. My surgeon said that if I chose not to go ahead with it. We can go down the hormonal route trying Zoladex for the first few months and than Zalkya afterwards for adynomyosis.

I am gravitated more towards the hormonal route but still not 100% sure.

Has anyone tried this and has it been helpful?

My surgery has already been booked for end of this month to remove endometriosis and I am still considering hysterectomy.

[Thecraftyadder in reply to Ayesfreen]

I have endo but not adeno but just a comment on the hormone side. I refused any of the chemical menopause drugs (which I think includes zoladex) as I was scared of the side effects and know they can't be used long term because of bone health. I am taking Zalyka (a different name but same drug) the first few months were tough with frequent bleeding (no more flooding -yay) but now I do not bleed at all as it's thinned the lining of my womb to nothing. I have gained weight and am suffering some anxiety issues but for me it's better than other hormones I've tried. However a number of women get very depressed on it and can't tolerate it. You could search on here under its drug name dinoegest to get a broad perspective on it. Only you know how you do with hormones. I don't envy you having to make the decision so soon. It's a shame you can't try the drug to see if you tolerate it before surgery but looks like there isn't enough time. I hope everything works out for you. It's a tough call.