Advised to have hysterectomy (stage 4 DIE... - Endometriosis UK

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Advised to have hysterectomy (stage 4 DIE endo) had hormone treatment instead?

Ess1982 profile image
22 Replies

hello, I was wondering if there are any women on here who were advised to have a hysterectomy for stage 4 Ddeep infiltrating endo (also endo on bowel) but decided to try hormonal treatment instead?

If you did I'd love to hear your experience(s) and which hormonal treatment you used? Also did your endo remain 'stable' or did you end up having the hysterectomy anyway?

Thank you so much for taking the time to read xxx

22 Replies
Lindle profile image
Lindle

A hysterectomy isn't a treatment for any stage of endo. It is a treatment for adenomyosis (endo within the uterine wall) and/or unmanageable periods. The only treatment for stage 4 endo is excision but a hysterectomy can be done at the same time where appropriate as the uterus (and ovaries) can by tightly stuck within the endo fibrosis and it can be even more complex to try and separate them out. Clearly this depends on individual circumstances in terms of age and whether there is a desire for pregnancy.

Medical treatment isn't effective for the endo itself as it produces its own oestrogen . It can help with symptoms sometimes but the danger is that the endo can continue to progress. Severe endo can become non-progressive though but there is no way of predicting this.

Ultimately surgery is done for pain and/or infertility and when for pain it is a case of balancing the risks of such complex surgery with quality of life now.

Ess1982 profile image
Ess1982 in reply to Lindle

thank you for replying, I should've phrased my question better. I have adenomyosis and I am having a hysterectomy (including ovaries) as I also have stage 4 endo,

Cheerey profile image
Cheerey

I have stage4 Endo on the bowel and I feel yiur pain! My only options where hysterectomy or a bowel resection surgery.

I was crippled with the pain.

So they put me on primolut 5mg / 10gm which is a form of progestin.

This helps to slow down growth endometriosis tissue & the lining of the womb from growing too quickly.

It's help me alot with the pain & heavy bleeds. Now my periods are light, pain is still there but I can manage it better.

My Endo has been stable with no flare up, touch wood!

I Hope this helps!

Cheerey xxx

Ess1982 profile image
Ess1982 in reply to Cheerey

thank you for replying cheerey, that's my worry the bowel resection part it terrifies me so much. Much more than the surgical menopause. I met with the stoma nurse today, she was brilliant but it's incredibly overwhelming to think I'll have this surgical menopause to contend with and then possible the temp stoma. They did say they can shave the bowel however until the actuslly do the op they won't know if they need to resect this decision is made at the time. I know my ovaries are tethered to my bowel and I have bowel adhesions. My gynaecologist said it's better to do the surgery all in one go rather than multiple surgeries. Which I totally understand. Now part of me wants to say just do the hysterectomy and only shave the bowel please don't recsect... but then I believe there is still a chance that E do in the bowel will continue to multiply. It's so hard to know what to do, I'm second guessing myself.

girli1111 profile image
girli1111

not exactly what you’re asking… but my ‘stage 4 deep infiltrating endo’ was excised second time around, and the surgeon was really keen to retain my one ovary and uterus rather than remove. (Other ovary was removed in previos surgery) the surgeon was really apologetic that the second ovary needed to come out, but my uterus was left in place. I’ve had no endo problems since (5.5 years ago now) . I’m on HRT because of surgical menopause.

Ess1982 profile image
Ess1982 in reply to girli1111

hi girli thank you for your reply, I'm really glad you are doing well after your hysterectomy. It's heartening to read positive stories. If you read my reply above it may make more sense what I was asking :) would you mind me asking you how the surgical menopause had been? Did you feel this immediately after surgery, and how long did it take for you to 'stabilise' and start feeling better xx

girli1111 profile image
girli1111 in reply to Ess1982

just to clarify, I havn’t had a hysterectomy, just oophrectomies and endo excision. I can totally understand your fears over bowel involvement. The extent of my bowel involvement wasn’t known when I went into surgery, and therefore a bowel surgery team weren’t present. The surgeon was concerned that she had had to leave some endo on the bowel, rather than risk perforating, and she had expected that I’d need further surgery involving a multi disciplinary team and there was talk of bowel resection and associated risks… fortunately I’ve not had to g9 down that path.

Ess1982 profile image
Ess1982 in reply to girli1111

hey, thank you for explaining. Would you mind my asking how long ago that surgery was? And if you've had any bowel symptoms?x

girli1111 profile image
girli1111 in reply to Ess1982

My last surgery was in 2017, so that’s 5.5 years ago now. I have no endo symptoms whatsoever since surgery, and no bowel symptoms. Prior to surgery I had had a couple of episodes of bleeding from my bowel which was diagnosed as gastroenteritis, but I’m now pretty sure that was the endometriosis. Before my surgeries my symptoms were mostly low key, and not diagnosed until I had an emergency admission with ovarian torsion due to a large ovarian cyst. Two years later second ovary was also engulfed with a large endometrioma. You asked about the surgical menopause symptoms. They came on dramatically quickly after surgery, but my excellent surgeon referred me immediately to menopause clinic before I’d even left the hospital. I’ve been on HRT since then.

Ess1982 profile image
Ess1982 in reply to girli1111

thank you so much for the detailed reply. Much appreciated x

Lilyjack profile image
Lilyjack

I think a lot depends on personal needs and preference.

I personally don’t respond well to hormonal treatments but I’ve tried everything to avoid surgery therefore went through all available treatment options however I now have no other option but surgery.

I’m quite happy to go for surgery now therefore exhausting all other treatments has bought me the time and peace of mind I obviously needed to prepare myself.

If you need time try all the other options available and push surgery as a very last resort. I wish you the best of luck in finding your way

Ess1982 profile image
Ess1982 in reply to Lilyjack

Hi lily, thank you for taking the time to reply and for your kind words. I'm similar to you I've stayed away from hormonal therapy as it's never really suited me. (The only exception being with I was 24 I had zoladax).

I'm now having a total hysterectomy with possible bowel resection. This is the bit I'm nervous about.... as I've had recurrent pelvic infections since I (as a total last resort had the Mirena coil fitted which was only in for 1 week but introduced an infection that lasted nearly 7 weeks I was in agony I can't begin to put into words the pain) I've now decided it's time for the hysterectomy. I wouldn't be able to handle that pain again. So I have made peace with the hysterectomy (including ovaries) I think I've struggled with this long enough and it's been a wake up call that I need to prioritise my health. I also have adenmyosis and rheumatoid arthritis.

Good luck in the surgery you choose too xx

Awwy profile image
Awwy

Hi lovely,

Hope you are as well as you can be.

I have stage 4 DIE, bowel and bladder.

My first consultant that I was under told me I would need a full hysterectomy and that would 'cure' my endometriosis. I was 37/38 at that time. When I asked if there were any other options they said no.

That set alarm bells ringing for me as I had done my own research and knew that there were other options qnd hysterectomy isn't a cure. So I moved to another consultant.

They did put me on prostrap (GNRH analogues) and add back HRT. At the start it helped me with my pain it was like a miracle. Then after about 6 months I started to need it every 10 weeks because I knew when it started to wear off that pain would return.

My second consultant one that I chose was very empathetic and listened to me. He switched me to Zoladex with add back therapy. He said he would do his best to preserve as much as I asked for and wouldn't force me to have a hysterectomy.

Zoladex I have every 10 weeks too as I was back in pain when it wears off.

I have an appointment tomorrow to discuss my plan now that I've had an investigative laparoscopy.

Wish you all the best. You know your body best not them. X

KlP28 profile image
KlP28 in reply to Awwy

Hi, hope you don’t mind me asking. Why did they switch you from Prostap to Zoladex? I’m in a similar situation.

Thanks x

Awwy profile image
Awwy in reply to KlP28

Hi, I dont mind you asking at all. I switched because Prostrap wasn't giving me the relief from the pain. It would last 4 weeks then I'd be in pain by the time I went for my next dose.

Zoladex gave me better relief. Although now I am finding this is going the same way. Wearing off at 8 weeks.

I've had a Dexa scan to make sure my bone density is ok whilst being on these.

Hope that helps 🙂

Ess1982 profile image
Ess1982 in reply to Awwy

Hi Awwy,

Thank you for replying to me, I really appreciate it. I hope your appointment goes well.

I think I've made peace with the hysterectomy (I also have adenomyosis) mentally preparing for the surgical menopause bit as also having my ovaries removed. Was just a bit unsure on the bowel resection as it feels rather terrifying. Xx

Awwy profile image
Awwy in reply to Ess1982

Thank you im just hoping they will help

SarahAnne81 profile image
SarahAnne81

Hi, l have endo stage 4 and DIE stage 4 l was in line for a hysterectomy but this was due to a cancer scare (5.5cm endometrioma). I am now exploring excision as l have read thats the best option for DIE.

Ess1982 profile image
Ess1982

hi Sarah thank you for replying. I also have a large endometrioma (were so lucky aren't we!) along with the hysterectomy my gynaecologist will be performing excision surgery.

I hope you are well and it wasn't cancerous. Xx

GP204 profile image
GP204

Hi there. I had exactly that and had a hysterectomy. However I have a close friend who went the other route. She has been in horrible pain for years and terrible side effects from the drugs. She now has to go in for a colonoscopy as she has lots of blood. The fear is that the endo has penetrated through her bowl. I personally wish she chose the hysterectomy years ago. That unfortunately is the only experience I have to give.

Ess1982 profile image
Ess1982 in reply to GP204

Hey, thank you for taking the time to reply to me. It's reassuring to hear other womens stories. I'm really glad you are doing well :) did you also experience a surgical menopause?

(I hope your friend is better too) x

GP204 profile image
GP204

yes I did experience surgical menopause shortly after. I have been on Biodentical estrogel ever since and am doing much better. Thanks

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