Advice, please Hysterectomy or not?

[Bakewey]

10 weeks ago I had a diagnostic key hole procedure. It confirmed stage 4 endometriosis, multi fibroid uterus and on fibroid on cervix , frozen pelvis, obliterated pouch of Douglas & cysts of various sizes on ovaries.

The Dr was unable to fit a marena coil as it was impossible to insert due to the passage being tilted.

the biopsy material was inconclusive when tested.

I have since had a MRI.

It has since been suggested that I have an hysterectomy, but I am scared as I am in more pain after the initial diagnostic laparoscopy. Has anyone been in a similar situation and benefitted from the hysterectomy itself? As it stands, I’ve been bleeding for weeks, passing huge blood clots and not been able to resume my normal routine.consequently, I not sure what to do for the best.

I am 50 years old and other than Endo am in good health.

[Lindle]

Which part of the UK are you in and was the lap done in general gynae or a specialist endo centre?

[Bakewey in reply to Lindle]

In South Essex. Not an Endo specialist centre, but my consultant’s specialism is lap and Endo.

[painhater88 in reply to Bakewey]

Hi sorry to go of topic but i'm also Routh Essex, can i ask how long you had to wait for your Lap please? I'm still waiting since November.

[Bakewey in reply to painhater88]

18 months. I’m what they call a long waiter. Only got it due to a cancellation. Got the call on Wednesday and surgery on Friday.

Hope you get some positive news soon.

[painhater88 in reply to Bakewey]

Thank you for the quick reply, i phoned the other month and they told me theres loads in front of me. I was told to let nature take its cause while i wait so i'm now reaching breaking point. Sounds quick once you get the call.

[Lindle in reply to Bakewey]

You must only be treated in a specialist endo centre by law. With the severity of what you have your pelvic organs are likely to be fused together like concrete. It’s never a matter of just having a hysterectomy when the uterus is at the centre of such severe fibrosis. There can be very high risk of damage to your bowel and other vital structures if anyone tried to dissect out your uterus and ovaries. The usual course would be a pelvic clearance at your age to excise all the endo along with the uterus and ovaries if they can’t be salvaged.

[Sunset-lady in reply to Lindle]

Totally agree.

[Bakewey in reply to Lindle]

How do you know if it is a Endo Centre Rather than a hospital?

[Lindle in reply to Bakewey]

The endo centres are on this list

bsge.org.uk/centre/category...

Send me a message if you like with your surgeon’s name.

[Bakewey in reply to Lindle]

That is so useful, just checked it out and he is on there.

You have put my mind at peace.

[jen2023 in reply to Lindle]

So glad i read your comment! Is pelvic clearance excision/taking out the cysts/ nodules, adhesions? If the organs are fused too tightly and cannot be seperated(?) to get through to the uterus and ovaries, a hysterectomy is not physically possible right? Sorry if this is a dumb question...

I have stage 4 DIE, severe bowel and pelvic pain symptoms, pelvic organs fused together, ovarian cysts on both. I am having a surgery in 4 weeks for partial or full hysterectomy, bowel/rectum shaving, excision of ovarian cysts. I might end up not having my uterus and ovaries out if my bowels, uterus are fused too tightly?

[Lindle in reply to jen2023]

Not a dumb question at all. I saw doctors referring to 'pelvic clearance' and was confused myself. It means taking everything out, so the uterus, ovaries, tubes and all identified endo cysts/nodules and adhesions (both found on pre-lap imaging and at surgery).

Stage 4 is when the bowel is stuck to the back of the uterus, usually at the cervix, and the pouch of Douglas between the two (which should be a space) is no longer there as the two structures are drawn together by the endo fibrosis. This is an 'obliterated' pouch of Douglas. When the ovaries are also drawn in, and sometimes the bladder, it is a frozen pelvis.

When you say 'I might end up not having my uterus and ovaries out if my bowels, uterus are fused too tightly?' that is when the uterus and ovaries often have to come out as it's too dangerous to try and separate them out. They will have to separate your uterus from the bowel of course and if they are planning shaving they are presumably assuming at the moment that your bowel wall isn't deeply involved. When the ovaries are deeply adherent to it all there is a danger of a bit of viable ovarian tissue being left behind if attempts are made to dissect them out. This can then re-establishing a blood supply and continue to function like an ovary. This is called ovarian remnant syndrome and these residual ovarian structures can end up hidden anywhere in the pelvis making it a very difficult condition to treat. Having said that, surgeons will try and salvage at least one ovary if it is possible without damage to retain some ovarian function.

Something to be aware of with a total hysterectomy is an understanding of the uterosacral ligaments. These ligaments support the lower uterus in the pelvis and are attached to the back of the cervix and go round either side of the bowel and then attach to the sacrum. These ligaments are by far the most common site for deep nodular endo and will usually be involved with stage 4. With a total hysterectomy they cut the ligaments and then re-use then by stitching them to the vaginal vault to support the vagina. We see cases of US ligament endo being retained and continuing to grow in the vault, causing severe ongoing pain. I would be sure to mention this to your surgeons asking them to ensure that all of any US ligament involvement, and this might just be thickening without any obvious visible nodule, be removed before stitching them back to the vault.

I assume you are under a specialist centre.

[Bakewey in reply to Lindle]

Wow, you know a lot about Endo. I will make sure I ask these questions when I meet the surgeon.

Thank you so much for a detailed and useful reply.

[Lindle in reply to Bakewey]

Feel free to dm for more resources.

[jen2023 in reply to Lindle]

So sorry for this late reply!!! Your insightful advice and knowledge really helped me with my surgery. I asked the right questions to my surgeon after your advice. My surgery went well. Thank you from the bottom of my heart ! Despite a good surgery result, I had a tough post op recovery . Now I am in surgically induced menopause and in living hell with severe menopausal symptoms. I thought endo was tough, menopause is another wft situation....

Thank you again for sharing your insights and in-depth knowledge on this. I greatly appreciate your time and efforts to respond and share. Sending you my best wishes from Sydney Australia.

[Joeyb247]

Hi there, I had a hysterectomy in December 2023 and I am glad that I did. I had suffered with endometriosis and heavy bleeding for years, but just managed as we all do, I was recommended to have the have the surgery after a hysteroscopy showed my womb lining was thickened, I was 46 at the time and had been on HRT for nearly 10 years as had early menopause. My surgery was done keyhole, initially the surgeon miss judged the severity of my endometriosis and he attempted the surgery but stopped due to fear of bowel damage. I was then scheduled for surgery in the Christie using the davinci robot with a colo rectal surgeon on standby, I had been told there was a chance that I may need a stoma if my bowel was damaged, so this was a worry. My surgery went well I was up and about a couple of hours after and the pain was minimal, I spent one night in the hospital and was allowed to go home the following afternoon as all was looking good. My recovery was fairly easy I had good and bad days, I kept as active as possible and rested when I needed to, I had 9 weeks off from work and went back on a phased return. I am now feeling better as not getting iron deficiency and not worrying about flooding when on my period, I don't miss my uterus, which might sound strange but was something I had worried about. Good luck with whatever you decide, and feel free to ask me any questions. Jo

[Bakewey in reply to Joeyb247]

Thanks Jo. I have been warned about having a bag and the amount of drugs that I received to clear my bowels in advance of surgery sent me over the edge as it all seems so real. Surgeon said that worst case, my bowel will need to be cut a bag in situ for 6 months.

I am so please to read that you are feeling better. Thank you for sharing your story. It gives me hope.

[Sunset-lady]

Wow your situation is almost identical to mine. I have the exact same diagnosis but I got mine after a abandoned hysterectomy. I opted for a hysterectomy as I was bleeding (hemorrhaging) constantly and i had several fibroids, but the team had no idea I had endometriosis. They couldn't do the operation and abandoned it as it was all fused and they weren't endo specialists. I then had an MRI privately and saw an endo specialist and it is identical to you. They don't want to operate on me as it's risky and I'm 51 so should be near menopause (the magic menopause lol ). I can't have the coil either as the opening to my cervix is odd and it won't sit. I'm under the care of an endometriosis centre and had another MRI just yesterday. I've been on zoladex since January and it has been a life saver for me as I was bleeding so much I was constantly anaemic which was awful. I have to have it every 9 weeks and this is the treatment until menopause. If you are on it with an endo centre you can stay on it longer. My consultant said that a bowel resection often results in further problems down the line, and for me it could result in a permanent stoma bag. I'm not in pain and now that the bleeding has subsided I can exercise again which is crucial for my mental health. I tried everything before zoladex, but it has been the only thing to work. I'm on add back HRT too which is very important if you want to feel good. I hope this is helpful x

[Bakewey in reply to Sunset-lady]

After reading your advice, I’ve sent a request to my consultant asking for zoladex ir similar. Today / last night my mental health crumbled which is not like me. Fingers crossed that I’m soon in a position like yours - your reply is useful and positive, thank you.

[Jingles11]

Hi, I had a total hysterectomy nearly two years ago aged 51. This was due to Adenomyosis, Endo/cysts on my ovaries, multiple fibroids and adhesions.

I was bleeding heavily and passing clots almost daily despite being on Zoladex! For me having the op was a life-changer and i’m so glad I did. Although by the end I can't say I had much of an option I was so unwell.

Everything was removed through a bikini cut and whilst it did take me about three months or so to fully recover, I don't regret it. I take low dose HRT and feel like a new women. Any questions feel free to ask

[Snowwhite2207 in reply to Jingles11]

Hi, I feel the very same sister. Had my hysterectomy 5 weeks ago - still recovering, but best thing I did !!!

[AllthatGlitters in reply to Jingles11]

Hello hope you don’t mind me asking, how did you cope mentally prior to having the operation and deciding to get it done? Has your symptoms all disappeared?

I still can’t get my head around it and I think it’s because I don’t have children.

X

[Jingles11 in reply to AllthatGlitters]

Hi, yes all of my symptoms have disappeared.

I think I had reached a point where I was ready mentally.

I could barely go out and had to work from home when I was able.

I was also totally exhausted from the bleeding and very stressed emotionally.

So for me whileI knew it was a major operation it wasn’t a huge dilemma and it really was the only option.

I was very nervous prior to having it done, what if something went wrong etc. I just tried to focus on how I wanted to be after the op and think positively about the improvements that would happen in my life post surgery.

I was concerned about how long I would take to recover and if I would be able to have orgasms /sex drive etc. I can say all of the above is in good working order.

Best of luck with your decision X

[AllthatGlitters in reply to Jingles11]

Thank you 💜

[Bakewey]

I’ve not tried Zoladex so I may ask to try it before surgery. Though truthfully, despite being petrified of going under again, I do feel it is inevitable now as I’m just in agony each day.

I’m so pleased you have a new lease of life and are feeling well. It’s good to know there is light at the end of the tunnel.

Thank you for replying. Your answer had made me feel brighter.

[Esmeisthebest]

That’s a really personal choice but honestly I had a hysterectomy 3 months ago and it’s the best thing I’ve ever done. I’m 43 and had stage for complex endometriosis all over the place including endometriomas in my abdominal wall.

The first few weeks of recovery were tough as I’d had laparoscopic and full abdominal surgery. After the 3 week mark the pain was so reduced it was crazy even things like relentless heartburn and ibs symptoms were gone. It was 💯 worth it for me. Good luck with whatever you choose

[Bakewey]

I am delighted to read about your recovery. It is good to know that after the fear all this brings, life can get back to normal. Thank you for taking the time to reply - this has helped me and I’m sure others.

[Snowwhite2207]

Hi, I had very similar symptoms and just 5 weeks after a modified radical hysterectomy ( because of my endo ) . My ovaries and lymph nodes were kept but had numerous adhesions - scarring and one endo nodule excised . Surgery was almost 3 hours long ( robotic laparoscopical ) but it was the best thing I did!!! I am only recovering now,butmy symptoms - all of them - dissapeaed immediately. I was told he scraped and cleared everything out and that it will not come back. Am 48 years old. I want to let you know, that you will be ok if you will go for a hysterectomy. At least I am - always tried to avoid my hysterectomy, but it turned out the best thing I did!!! Good luck with your decision - I sincerely believe it would be the best thing for you if that is what they tell you also. xxxx

[Bakewey]

thank you for replying. I am so pleased to read that you are feeling better.

I’m on holiday and for 2 days I was unable to leave my room/ walk api think I will go gif it. Your reassurance is really encouraging; you are right, I should follow the doctors advice 👍