Hysterectomy & ovary removal - what do you wish you'd known first?

Hi,

Thinking about surgery, the consultant explained to me that my options might range from removing the endo lesions and restoring of anatomy position, to total hysterectomy with bilateral salpingo-oophorectomy (removal of the uterus, cervix, fallopian tubes and ovaries).

I still need an MRI scan to see what they will recommend.

However, in the meantime, I'm trying to understand the implications of the far end of the spectrum - hysterectomy & ovary removal. I don't even know what to ask.

I'm almost 42, so hope I would take HRT add-back to protect against bone loss.

I read the uteral-sacral ligaments have a structural component. I'm worried about what could happen to the spine and other organ positions without that support.

And what about the other hormones the ovaries influence? Even with HRT add-back, that won't cover the complexity of the hormones ovaries are involved with, I would guess.

So, this is my open question:

For those who have had this surgery, what do you with you'd known first so that you could plan to manage your long-term health better?

[Bigsize9foot]

Hi. I don’t have any knowledges to give but am in a similar position trying to decide whether to have ovaries removed or not. I’m finding it impossible to make a decision- there is so much information. My nhs gynae basically said hears your choices (ranging from the combined pill to full hysterectomy) you decide. I’m going to pursue private healthcare as a 2nd opinion as see if that helps me decide x

[Dogmad6]

Huge decision for you! My endometriosis specialist said he wished he had left me at least one ovary. Not long after I had total hysterectomy and bilateral oopherectomy, some new research came out to show removal of ovaries is really bad for the health of your heart. He felt bad about it but did what he thought was best for me at the time.

I did also have lots of excision surgery on various organs, total peritoneal excision etc at the same time.

In terms of how you actually feel, lack of supportive ligaments you mentioned, I've had no problems whatsoever and didn't feel any different.

It's 17 years since that particular surgery although I've had further excision since.

By the way, personally I wouldn't touch HRT. I once tried a topical oestrogen cream which in no time caused my endometriosis symptoms to flare - well what a surprise!

What you could do is to take medication to protect your bones. Unfortunately this proved impossible for me as I couldn't tolerate any of them. I rely on a high calcium diet to help with that although I do have osteoporosis.

I hope this is of some help to you.

Good luck xx

[Hidden in reply to Dogmad6]

Hi Dogmad,Thanks very much for telling me about how things have gone for you. It's really helpful to hear another perspective.

It's very good news to hear that you've been more or less ok after surgery, although you've had osteoporosis. It's too bad that you've had to go back for further excision, but at least it's been an option to try to become more comfortable again. I can only imagine how annoying (and painful) it must have been to need excision again after having the original surgery - considering that it included a hysterectomy, oophorectomy, and total peritoneal excision.

As you can imagine, I was trying to weigh up which choice might give me the best statistical chance of not having to return for a following surgery for endo. It sounds as though there are cases like yours where even after everything is cleared out, the endo can still return.

Things might possibly have changed in terms of HRT lately. I'm trying some time with chemical menopause using the decapeptyl injection, and taking tibolone tablets as the HRT-add back. Tibolone doesn't actually contain the hormones itself, it has ingredients that the body can use to make a tiny amount of hormones - just enough to help with bone and heart health, but hopefully not enough to irritate the endometriosis. It also helps to reduce the symptoms of menopause (hot flushes, etc).

[Dogmad6 in reply to Hidden]

That's very interesting about Tibolone, not heard of that. I'm sorry to say I am far from well but I have now had so much surgery, my endometriosis specialist doesn't want to do any more surgery unless there was anything massive and deeply infiltrating. I recently had a scan to show this wasn't the case.

Personally, I don't think cases like mine can ever be cured properly. I can suffer pain that is off the scale.

A couple of months ago, I fainted due to pain when I was in the bathroom, went down face first into the shower and broke my nose. Luckily nothing else broken but shook me up very badly. I've not really recovered mentally from that as yet .

I've passed out twice and knocked my chin in the bathroom in the past so have a scar on my chin. Bathrooms and I don't get along😅

I get so upset when endometriosis is trivialised when I think how devastating it can be.

I don't want you to think that a hysterectomy will cure you and then it may not. Some people are a lot better but I think much possibly depends on where you have the worst endometriosis.

xx

[Hidden in reply to Dogmad6]

Hi Dogmad,That's a horrible situation to be in.

I wish it were going better for you.

I know what you mean about not wanting people to imagine a hysterectomy will be a cure - because there isn't a cure. It's a pretty frustrating situation. However, it seems to improve things for some people, so it's one of the options on the table. *Sigh*. It might possibly help to make things "less bad".

[Dogmad6 in reply to Hidden]

It could possibly make things less bad for you. At least you are well informed and can make the best decision for yourself. Good luck with everything. xx

[Dogmad6]

ps highly recommend private endometriosis specialist if you can find a good one. My NHS care was useless and had I gone for surgery, I am convinced I'd now be in a worse mess. xx

[Jraid]

I had a hysterectomy in 2018 at age 41. My main endo symptoms were bleeding for 2 weeks every 2 weeks and a brown discharge for a week with period pains the week before starting and that was all with a marina coli in. So I thought a hysterectomy would help. My consultant said I could leave my ovaries in and if they caused any problems they could go back in and get them out.

Well I felt amazing for 7 weeks post hysterectomy and then pain returned I needed 7 months off of work. I went back for a post op apt with my consultant at 3 months and I told him about the pain. He dismissed it being endo related and said it must be IBS and discharged me back to my GP and recommend I get a GI referral 😳. This was a BSGE centre consultant as well and at the hospital I work for and I know the Dr!!

So I got referred for a second opinion and a year later I had a laparoscopy and endo was found on my bowel and bladder which he removed and my right ovary was stuck to my pelvic wall which he unstuck and put a membrane around it. I was discharged pain free for 6 months.

I am now with my 3 hospital and back under a BSGE centre and on Gonapeptyl injections since January (like zoladex and prostrap) and have had some pain free days. I started HRT tibilone in April as the menopause symptoms got to much. Hot flushes were bearable but I started getting heart palpitations, raised BP and bad anxiety and not sleeping well which the HRT delt with but it also increased pain.

I have another apt on 10th May with the consultant which has been bought forward from July as I’m due to have my next injection on 14th June.

My question is do I now ask for my ovaries out or am I asking for yet more irreversible problems.

I do wish I never had my hysterectomy but my husband says it did solve some problems but created different ones.

I think if o had my ovaries out I wouldn’t take HRT as feel it would make the endo grow back and I just can’t risk that!!

Good luck and let us know how you get on!

[Hidden in reply to Jraid]

Hi Jraid,I'm interested - if the hysterectomy solved some problems (I assume period-related), but created others, would you mind telling me about what kinds of problems the hysterectomy created for you?

The reason I'm asking is that I'm noticing a theme in peoples' stories - it sounds as though many people try the least surgery first, planning to return to surgery if needed later. And then, there end up being multiple surgeries (and the pain while waiting, which is major in terms of quality of life impact).

Your question about whether or not to keep the ovaries is a good one. I hope you'll get a chance to discuss the pros and cons with a good gynaecologist at a BSGE center.

As for me, I'm awaiting MRI scan results, and I'll get a recommendation regarding surgery around the beginning of June. It may sound crazy, but I might choose the option for the endometrial excision as well as hysterectomy & ovary removal - if this "bundle" has a statistically lower chance of needing more surgery in 2 to 5 years.

So, that's why I'm trying to imagine what life without a uterus could be like. Is it ok? Or is it actually terrible? I really don't know.

[Jraid in reply to Hidden]

I am so sorry I didn’t get a notification that you had replied to me 🤦🏻‍♀️

Yes the hysterectomy resolved my bleeding problems and gave me good vaginal health. But from 7 weeks post surgery I was in pain daily in my pelvic on area on the right. Some days I couldn’t even walk! This was all new to me as I had pain in the past but only for a week or so before my period and I hadn’t had that bad pain since before my marina 10 years previously.

So my mentally health was affected, what I was capable of physically, work was out of the question for 7 months and then when I went back I struggled through each shift.

I have now been on the Gonapeptyl injections for 6 months and I am pain free for the first time in 3 years! 3 years of daily pain and living half a life!!

My consultant agreed to remove my ovaries and I am waiting for a date but I don’t think I want them out now. I am so scared of being in pain again or doing something irreversible and my quality of life be poor again!

Life without a uterus is great if you don’t have endometriosis!

Have you had your MRI, surgery or anything yet?

[ciaotuffy]

Hi June_viola, I'm facing a similar situation to you in my options at the moment. I've decided to go forward with hysterectomy+ovary removal given I'm 49. I had laparoscopy 7 months ago to remove endometrioma on left ovary, tubes, severe endo & uterine ablation. I was hoping it would bridge me a few years into menopause, but I can't do hormone treatment/pill due to breast cancer. I felt great for 2 months, then 3rd month started heavy bleeding & cramps again. But 5 months post surgery I was in emergency from severe pain on right side. Turns out I have a 5cm endometrioma on right ovary. I couldn't believe it grew so quickly! Given it's causing so much pain and growing so quickly, the surgeon suggested I remove it sooner than later. He offered 2 options- to take out the cyst and leave part of my ovary, try another ablation but leave the uterus or just take everything out now. People have said that if you have these cysts, they will grow back, just a matter of how much time. Since mine grew back so quickly, I assume it will come back again quickly. That's why I decided that at my age, I might as well take everything out now and spare myself another surgery. The prospect of having 3 surgeries within a year isn't good.

Sorry I don't have an answer for you. But I have talked to a few people who have had hysterectomy for various reasons, and they are doing great with no regrets. Most had a pretty good recovery with no complications. I am scared to death of all of the possible complications and the menopausal side effects. A friend was scared that without the uterus to hold things up, she would turn into a shapeless blob. Her dr laughed at her and told her that wasn't possible. She actually bounced back quickly, lost the swelly belly after a few months and says she doesn't at all think about or notice any difference without uterus. She's my inspiration. Another friend pointed out that most people my age are already going through menopause anyway so it shouldn't be That scary. My surgeon did a great job last time, I had a good recovery so I have to trust that he'll take good care of me again. I keep waffling between knowing that this is the right choice and thinking I should keep those organs.

Feel free to message me if you want to chat more. It is such a tough decision to make. Good luck with your decision process! xx

[Hidden in reply to ciaotuffy]

Hi Ciaotuffy,Thanks for sharing some of the decision process you're following. It makes a lot of sense.

I hadn't really thought about the endometriomas coming back repeatedly, but that's a good point. I suspect that even when they're relatively small, for people who have symptoms, they likely cause discomfort.

I guess I'd been thinking about the general likelihood of the endometrial lesions returning... Thinking that if the body was quickly progressing with endo before surgery, it would likely be helpful to remove things that could influence the cycle starting again or continuing.

Thanks for telling me about your friends who is doing ok after a hysterectomy. It helps to know there are people who go through this and feel ok after.

[Mummabear1973]

Hi June, if I'd known 10 years ago now I would have chosen to keep my ovaries. I had surgery due to stage 4 endometriosis. I had a full hysterectomy and if I'd known there was such little support out there with regard to HRT management, mental health issues and general pain management I would have found another way. I feel as though I've been left to just "get on with things" over the years. It's pretty tough on a daily basis, my biggest concern is my general health and well being. Just last week I had an experience where my back went and couldn't move for a few days.. no warning! I am still trying to work part time but I am considering giving up work. On the plus side I always try to remain positive and am thinking of ideas to improve my general well being and health.

[Hidden in reply to Mummabear1973]

Hi If you would have done something differently, other than hysterectomy & oopherectomy, what would it have been?

Do you think your back issue is related to the hysterectomy you had?

I'm interested in what wisdom you might be able to share. 🙂

In my case, stage IV endo, I've tried many things, but they have not managed the endo symptoms. This is why I'm planning to have a hysterectomy and oopherectomy.

In hormonal treatment, I've tried the Mirena and mini pill, and am now on decapeptyl and tibolone HRT add-back.

In pain management, I'm on Duloxetine, diclofenac, paracetemol, occasional co-codamol.

For quality of life, I'd like to avoid returning for multiple surgeries. That's the idea behind removing the ovaries - to reduce the estrogen irritating the endometrial lesions in the pelvis. Otherwise, I'd need surgery every 2 to 5 years at least until menopause.

I'm 42, so about 8 years away from the average of menopause.

Thoughts welcome!

[Mummabear1973]

Hey June, many thanks for your reply..

I'm not sure if the back issue is directly related to surgical menopause, I do however know that I have had severe pain for quite a few years now, I would say it began with a vengeance in 2019.

I too had stage 4 endometriosis and also had a mirena coil for a year prior to surgery. I can't say it helped with the painful and heavy periods. Essentially I was told that if I didn't have surgery I would die! 😬 I think if I was faced with the decision again I would have definitely asked to keep my ovaries. The oestrogen depletion has left me a shadow of my former self. I am a natural worrier but could always look on the bright side.

I was using evorel 25mg patches for around 8 years but felt it was no longer doing anything for me, I then used oestrogel gel for a short period, but I encountered some stomach issues, regular bouts of diarrhoea on a weekly basis, I was told by my GP and a gynae specialist that that was not possible and it could not have caused that, I have become very in tune with my body since the surgery and I'm hugely sensitive to any hormonal changes, a sudden rush of synthetic hormones and my body now rejects it.. 😪

Pain management wise at the moment I'm using co-codamol high strength which causes constipation.. its the verocity of the pain that really gets me down. I know it sounds like I am focusing on the negative here but to be pain free from endometriosis is definitely a plus and also not having to worry about monthly flooding is also a plus.. 👌

When I find things to be really bad I also listen to binaural beats for pain management, it really helps with relaxation and can make me quite zen, I suppose you could say its a form of meditation 🧘‍♀️

I hope that despite my thoughts and views that your surgery will be successful and that your journey into the next stage of life is smoother than mine has been.. xx

[Tranquilwaters in reply to Mummabear1973]

Hi Mummabear. I've had the same surgery as you and am now 52. I had the surgery at 46. I am just curious as to why you were prescribed such a very low dose of HRT? A 25mcg patch isn't even licensed to treat hot flushes or other systemic menopause symptoms, it's just a 'starter' dose and can be used for some protection against osteoporosis in women who are otherwise symptom free and for whom bone sparing drugs are not suitable. Hormones now are not synthetic, either - all estrogen products available are now body identical and are made from soy or yams (such as Estrogel, Estradot patches, Evorel etc) - the only non body identical is Premarin, which is derived from pregnant mare's urine. If you're still suffering, you absolutely should be offered HRT and if you haven't managed to find relief or have complications, the NHS NICE guidelines clearly state that a referral to a specialised menopause clinic should be offered. Please don't suffer on in silence.