Is a hysterectomy the right thing to do?

[clareheraty]

Hi, I am a bit worried that when I get my hysterectomy that it won't get rid of my stage 4 endo. I've been reading messages and it seems it can come back??? My endo is on my ovary (only got one), pelvic wall and bowel. A bowel surgeon is going to be in theatre to fix that so hopefully all will be ok afterwards. Do you think is right or am I being lead to think this? X

[Blossom22]

Hi clareheraty, wow I’ve just read your post and I’ve got very similar endo stage 4 to you, only my consultant refused to operate on me said it was to dangerous cause everything has fused together and I would be left with a stoma, and would have to go to Oxford to have the surgery, so I’m back on the prostap injections again but the pain in my bottom and tummy is horrendous the worst it’s ever been. My consultant also said having a hysterectomy might not cure the pain cause the damage had already been done! I’m so confused to what to do?! What has your consultant told you, good luck with you op x

[EndoJaz in reply to Blossom22]

Sounds awful, how can they leave people in this much pain x

[clareheraty in reply to Blossom22]

Hi, I haven't even seen a consultant yet, i'm waiting on an appointment and been told it is a 30 week wait! Im on them injections too and i found they really help but the pain is still sometimes unbearable. I think my Endo is just on my ovary and bowel, to be honest no one has really told me much about it. every appointment i've had they seemed to just want to get rid of me. suppose I'll have to wait until my appointment comes through. I will keep it updated on here if i hear anything. Thank you for your reply and good luck. hope pain not too bad today x

[EndoJaz]

I had a hyst 2 yrs ago but left ovaries in, it removed it but now reckon its back..awaiting MRI results. Talking about removing ovaries but I am scared this will bring on different problems but cant live with this pain. The hyst obvs stopped the flooding which is one less problem but its like we r stuck in a situation with no answers. Even if ovaries removed I have heard it can grow back if they leave a bit in. Confused and peed off!

[Blossom22 in reply to EndoJaz]

Hi, I know they leave the ovaries in to stop you going through a menapause but it’s the ovaries that cause the endo!, I’ve already had one ovary out, my consultant has never mentioned having a mri scan I think it would be a good idea to find out what’s going off, you must feel really disappointed having had a hysterectomy and still having problems, sending my wishes to you, I know how it feels x

[EndoJaz in reply to Blossom22]

Yeah especially after they have told me I am imagining it, its IBS and a hernia!! Went in for hernia op but they couldnt find it! After taking a detailed symptom diary to gynae appt, they finally listened and think it could be on bowel..Just confused what to do next. Been offered injection to put ovaries to sleep whilst waiting for op but that sounds awful too. I think I will ask for a lap before the drastic action of removing o’s to find out exactly whats going on. So scared and fed up with it all, every day is a bad day. We must try to keep smiling no matter how hard, try to be normal and not a miserable cow all the time but its hard. Xx

[Blossom22 in reply to EndoJaz]

I know what you mean I keep smiling cause I get the impression people just think oh it’s only period pain!! Wouldn’t wish this on anyone xx

[clareheraty in reply to Blossom22]

you know I'm really surprised so many have this Endo, i was so oblivious to it until I was diagnosed. something needs to be done surely. the amount of people waiting and the time they are waiting is awful. so much pain and not only the pain but mentally too and it is ruining lives and relationships.

sorry about the anger but it gets me down. I am not very patient ha x

[regina79 in reply to clareheraty]

I strongly follow what Christin said: Make sure you demand to have a Laparoscopy only by an BSGE accredited surgeon. Don't accept anyone else. Because they might cause you more damage than help you... Take it very seriously hun. Good luck xxx

[clareheraty in reply to regina79]

Hi had a lap last Sept which was when they found the Endo but it was just with a gyne surgeon as they were originally only taking out a cyst/ovary. hopefully my next surgeon will be an expert.

Thank you x

[regina79 in reply to clareheraty]

I see! I had the same... went to a non-specialised one with my first lap. he didn't do all he was supposed to do. He did the main big things. x

[Christin_a]

Hello because by definition endometriosis is outside of the womb. A hysterectomy is not a cure, and there is no cure for endometriosis.

Yes some people do have alleviated symptoms post hysterectomy, but it can still grow back after surgery and some it doesn't help as the cells are outside the womb so by taking it out it doesn't actually change anything.

To treat the endometriosis excision surgery should be used, as this removes the effected cells.

Are you being treated by a BSGE gynecologists not general gynecologist, as they're at specialist in endometriosis. And with stage 3 and 4 in the UK you should automatically be sent to these centers to be under their care.

[regina79]

Hello lovely,

from what I understood, an Hysterectomy won't help if the Endometriosis is located 'outside' the womb! It will only help if it's affecting the womb inside.. But I might be wrong. Please do some more thorough research into this. Where is your Endo located?

Good luck! xxx

[clareheraty in reply to regina79]

Hi,

They have said it is in my ovary and attached to my bowel and pelvic wall. I will be asking a lot of questions on my appointment. when i finally get one!

I will be asking if it will make a difference most definitely. Thank you x

[regina79 in reply to clareheraty]

I had the same! I had endometrioma cysts inside both of my ovaries and a nodule under the ovary too. Then they also found endo attached to bladder, uterosacral ligaments, side pelvic wall and bowel. I also had fibroids, one on my left tube and it was all removed. The other fibroid is attached to my womb so they didn't want to remove it as it's too difficult to access without causing damage to the womb.

You should not be needing a Hysterectomy in order to remove endo in ovaries and outside! It's not affecting the womb so removing the womb won't really make any difference?! It makes no sense. xx

[clareheraty]

Hi Christina, Thank you for your reply, i'm not sure who my consultant is until my appointment. BSGE has never been mentioned to me so i'm not sure. I'm just hoping with my endo being on my ovary it will get rid. fingers crossed for us all x

[Christin_a in reply to clareheraty]

Do you know which hospital it's at? You can check atleast if the hospital is an accredited center, look up BSGE on Google and their website should come up you can check on there, you can also check who at the hospital is an accredited bsge gynecologist, so you know. First that you are being seen by the correct hospital, and when you get your letter through you know of its with someone who should be dealing with your case or if you need to get them to change or to one of the correct people.

Christina

[clareheraty in reply to Christin_a]

Hi,

yes i have been referred to Arrowe Park Hospital from Liverpool Women's. I will google this and have a look. Thank you very much

[clareheraty in reply to Christin_a]

Hi Christina,

I have just double checked and it is, which is good

[Tallulah182 Moderator]

Hi Clare,

I have the same as yourself. Stage 4 endo, my bowel, ovaries and uterus was fused together and also a 9cm cyst on 1 ovary and a 7cm on the other. I was told i had a high risk of having a colostomy bag after the surgery but i was lucky this was not the case in the end.

I had a complete hysterectomy, removal of ovaries and a bowel resection around 3 years ago. My surgery was complex and it was an open surgery not laparoscopic and like you i had a bowel surgeon in on the surgery. They advised me after that it was like someone had poured cement into my stomach.

I know alot of people will advise you to not have the surgery as this is not a cure, i at the time could not see any other way around it. I was in alot of pain all the time, taking morphine and pethidine daily just to get through the day so was willing to try anything to get out of daily pain.

I made the decision that was correct for me at the time, i am in very little pain now, i have some sort of life back and feel like a 30 year old again. I will say that the emotional impact was not one that i was prepared for and suggest getting counselling before the operation. I am only now coming to terms with the after affects of such a large and impactful surgery.

At the time i came on here for reassurance about what i was doing and got quite a few replies about not to get the surgery etc, but in my mind it was a risk i had to take as i had no quality of life.

Look after yourself x

[clareheraty in reply to Tallulah182]

Hi

wow, sounds like you really went through it. poor you. i'm glad you are feeling much better now. thank you for the reassurance.

Clare x

[Tallulah182 Moderator in reply to clareheraty]

no problem, if you have any questions etc just drop me a message x

[Sarahdione in reply to Tallulah182]

This is exactly what I needed to read. I'm having the same operation April 26th and just met the stoma nurse incase I have to have a bag. Feeling so mixed about the surgery but holding on to the fact that living how I am at the moment is not acceptable. My body feels like I'm in my 80s

[luthien]

Endometriosis doesn't require any reproductive organs to grow; yes it's tissue is similar to that of what is in the uterus so it's though it starts with needing the uterus. Endo requires oestrogen to grow and as we are all mammals we produce it even in small amounts (males do too), when there's enough endo it produces it's own oestrogen. So a total hysterectomy will not get rid of endo doesn't matter where it's located; excision and hysterectomy may reduce the regrowth as there's a bit less oestrogen but no one can remove all the endo cells therefore it will always grow back. It can regrow in different places and produce different symptoms.

Your specialist may offer a hysterectomy if all other pathways have been considered, but should not suggest it as a "cure". Check out the NICE guidelines, google "NICE endometriosis" and it'll give the defined guidelines and best practice for diagnosing and treating endo, you can read up and quiz your specialist.

[clareheraty in reply to luthien]

Thank you very much for your reply and information. x

[Peebles2sarah]

Hysterectomy does not cure endo. Since it can grow anywhere, if you have it you have it. Excision is the best option to treat it. Unfortunately even a hysterectomy is not a cure (especially since yours is already on your pelvic wall and bowel). A lot of times it can actually increase pain because it’s a major surgery that will cause a lot of scar tissue. I would not recommend it at all.

[Angel71]

Hi,

I had deep advanced endometriosis stage IV in my uterus and on my bowel and I had it excised by laparoscopy 11 years ago.I felt much better for a while but it then grew back and the pain was no longer bereable, pain killers no longer worked and I struggled to function. As it was again stage IV endo in the uterus and bowel, plus I also had polycystic ovaries,adenomyosis and fibroids and I had tried any sort of treatment to manage it but without success, in agreement with my gynae 5 years ago I had total hysterectomy with removal of both my ovaries.I have been pain free for 5 years and I regained my life.I kept saying I wish I had this op before.However for the last 3 months I have been feeling unwell with symptoms that resembled a UTI and kidney pain but that didn't clear with treatment and got worse.Certain symptoms started resembling those of endo pain so I went to see my gynae who got me to do a ultrasound scan...and the endo is back! It's both on my bowel and behind my vagina. As I am on HRT the only options now are to get off HRT and get into full surgical menopause or another excision. I am in constant pain and painkillers don't do anything and I can't face this again.

So yes, endo can come back even with a a total hysterectomy and ovaries removal.Would I have a hysterectomy again ? Yes.

[clareheraty in reply to Angel71]

Thank you very much. 5 years of free pain sounds wonderful. Hope you get everything sorted x

[Angel71 in reply to clareheraty]

Yes it was great to be pain free for 5 years and I never thought to have to experience the same level of pain again, but I was unfortunately wrong.

I hope it all goes well for you x

[ccsmith]

Hi there I’ve been waiting for 10 months for a hysterectomy ovary removal and bowel resection. I have stage 4 endo with fibroids and large nodules on my bowel. I have struggled with severe endo for over 12 years and I’ve tried majority of treatments. the last treatment was zoladex, the consultant said it will give me an idea if a hysterectomy would help. It took 9 months + for it to help my bowel symptoms but I was functioning better than I have done in many years.

The consultant was honest that it would not cure me but would relieve the very heavy periods, severe pain for 2-3 weeks a month and hopefully my mood!

It’s a tough decision and I’m terrified it’s the wrong one BUT it feels like if I don’t do it I won’t know!

Good luck with your decision and journey xx

[clareheraty in reply to ccsmith]

I feel exactly the same way. Thank you x