Anybody opted for a hysterectomy, but ha... - Endometriosis UK

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Anybody opted for a hysterectomy, but had to choose between a good quality life, over having children?

Jasmin24 profile image

As my title pretty much says.

I'm finding it hard to decide. The desire to be a mum, or choose to have a life pain free.

I'm still holding on to that hope, but being in my forties, it's hard an chances are low.

I sometimes read on here, that some ladies, still endo back. Not only that, but do you get support if you have a hysterectomy, in terms of grieving process? It's such a big thing, when you don't have children.

It's tearing me apart. But I have no life, at tbe moment. My body is crippled.

Hope you are all well.

Any advice please

17 Replies

I do understand what you are going through.The endo has not made me choose, but I also have crohns which is not the best combination with pregnancy.

Everyone will have their own reason and choices to make which is best for them. I chose to adopt as I couldn’t risk my crohns deteriorating and not being able to look after my child. I have to say that it was the best decision I have ever made, a d will never look back.

But like I said everyone is different and what is best for one may not be for another.

Just sending hugs and hope you make the right decision for you xx

Jasmin24 profile image
Jasmin24 in reply to Ckcs2016

Ckcs2016, thank you for sharing your experience. It's been playing on my mind for months, and eating me up.

My partner always says I can adopt or Foster, but its easy for them to say.

Then I think, how can I be good for any child, being the way I am, not functional in any way.

Thank you again, it's very much appreciated.

I wish you health & happiness. Xx

Been in your very shoes. I couldn’t go through with it. I know I’ll likely need a hysterectomy in the future but I’m attached to my blood bucket. I have lupus too and am on disability. Children would crush me 100x over. I might freeze off some eggs from my one ovary. My husband has a genetic mutation so we have to do IVF if I ever I get the notion. The chances of making this happen are super low but I couldn’t make them zero. I had unilateral oopherectomy for benign mass and DIE excision 12/20.

It’s a very personal thing and I’m sure everyone’s thought process is one of a kind. Sending hugs. ❤️xx

Jasmin24 profile image
Jasmin24 in reply to Jmiller623

Thank you.

I am fond of my "blood bucket". It sort of gives me a sense of normal, knowing its not normal!

I can not afford to freeze my eggs, which throw that idea, out the window.

I just everything is against me.

I just sucks being a woman. My partner trys to help and be understanding, but I know its hard for him.

Thank you again, I do wish you all the best xx

Hello,I can see exactly where you are coming from, feeling forced to choose painfree over a baby. I made the same decision just before Christmas. I had an appointment with my consultant who suggested some options and one of them being hysterectomy. I was in so much pain that I felt it was the only viable option and the thought of getting my life back, outweighed the chances of a baby with ivf. However, after alot of tears, I decided that I needed more time to think it over. I've been in pain for so long that a few extra weeks wouldn't matter. I have adenomyosis too so I feel my chances are very small to have a baby. I've just received my first monthly prostap injection. I'm taking this day by day and I'm putting no pressure on myself to go through the ivf. I can barely look after myself at the minute, but the fertility Dr seemed confident that these injections will suppress the endo so might relieve the symptoms. I'm sorry I'm not much help, but I just wanted you to know you aren't alone. It's a scary decision, do what's right for YOU. Xxx

Jasmin24 profile image
Jasmin24 in reply to Petitechili

Thank you replying.

It's that little hope we hold on to.

I like you have adenomyosis, as well as fibroids and cysts.

I had prostap, but had to stop due to bone thinning. I have so many reactions to meds.

It has left me with using walking aids.

I have tried pretty much everything. Since my teens.

I'm waiting to hear from tbe consultant, to see what route will be best.

I do wish you all the best with your treatment.

Thank you again x

Petitechili profile image
Petitechili in reply to Jasmin24

Oh gosh, sounds like you've had a really tough time of it :( you've been through so much already. I hope you hear from your consultant soon. Thank you for sharing about the prostap, I'm only going to give this injection a few months and if I'm no better (or worse) then I will be opting for hysterectomy. I'm writing this as I lie in bed still, waiting for my painkillers to work. Bad day. I'm sure you can relate.

I really hope you can get the treatment you need to get some part of your life back to 'normal' painfree days. On a bad pain day that's all you want, is to feel half normal to be able to function.

I wish you all the best too xxx

Hello Jasmin. I am so sorry to hear what you are going through and the decision you're trying to make. I have been there under slightly different circumstances - I'd had cervical cancer before I was diagnosed with endo and already had my cervix removed - and eventually had a hysterectomy (one ovary left in) due to endo, adenomyosis and a large tumour. We didn't have any children (I was 37) but knew it was almost impossible with my body (we had two failed FETs) and are now in a surrogacy process.

My strong caution is that hysterectomy does not cure endo. My main symptom - debilitating sciatica - returned a few weeks after the hysterectomy and I'm now on a bespoke hormone treatment which has stopped my symptoms. I have a significant hormone imbalance.

Nancy's Nook has excellent information on why hysterectomy isn't (always) the answer and it is worth taking the time you are before putting yourself in the hands of a surgeon. The gold standard is excision surgery via a BSGE surgeon.

Your health is the most important thing and it's difficult to make wider decisions - such as around having a family - when you're in massive amounts of pain. Or it certainly was for me. I'm wishing you all the very best.

Jasmin24 profile image
Jasmin24 in reply to red_swim

I'm so sorry to had to battle through so much. But it's been good to read your story.It is such a hard decision, especially when you have so much elements against you.

I have adenomyosis, with fibroids and cysts.

I have tried prostap twice. First after my 1st surgery, then in 2020, after a diagnosis. But had to stop due to bone thinning. I then was put on Norethisterone, which caused an adverse reaction and spent about 3 weeks in hospital. This has left me with weakening to the rightside of my body, and facial palsy, as well as the chronic pain, which I managed for so long.

I'm going through physio, for both, and has left me with number of things to deal with. I need walking aids and a wheelchair somedays.

I am under a BSGE consultant, but asked for an MDT for the best route.

I took all those medications, to prevent grow, in order to have a child. But all failed and left me in this position.

For me it's that hope I'm hanging on to that they say the womb will be fine, but know I need to take the latter step, an look at different ways to alleviate the pain.

Heart and head are always divided.

Thank you so, so much for share your experience. I do wish health and happiness.

I will look up Nancy nook.

Hello jasmine, I’ve been where you are. It’s such a tough decision. Firstly I am living proof that hysterectomy certainly does not cure endo. The pain is very much still there. It’s shattered my life if I’m honest. I had 2 rounds of ivf and as the drs then thought that a hysterectomy would cure all my problems I went ahead with surgery. I was 32. I was put on hrt straightaway because of my age. As we all know oestrogen is not good for endo so more than likely that’s added to my problems. I’m now looking into excision surgery but that’s not straight forward either. I wish you all the best.

TennisAM profile image
TennisAM in reply to Gwen172

Sorry to jump on the thread (and to hear of the pain), did they excise endo when they performed the hysterectomy?

Gwen172 profile image
Gwen172 in reply to TennisAM

I found out years later that no endometriosis had been excised during the operation. No wonder the pain remained exactly the same. I did tell them this during the follow up appointment but they didn’t want to know. This was back in 1995 so things have improved since then.

TennisAM profile image
TennisAM in reply to Gwen172

Sorry to that. Even now, there are so many misconceptions that a hysterectomy is a "cure" within the gynae world.

Hello.I read your message. I felt for you choosing children or hysterectomy.

Couple months ago I had laparoscopic surgery removal of endometrioma cyst on my left ovary, at first the surgeon wanted to remove my fallopian tube and ovary left side. They where pretty amazing preparing for the worse. The surgeons did know what they where dealing with until I went in for surgery as it was 8cm cyst didn't know how much damage the cyst had done to my ovary, plevis wall and rectum.

In the end the endometrioma was drained out through laparoscopic. As surgeons and doctors told tell you much I had to come on here and ask these wonderful women if endometrioma can return and I got a yes. I personally would of perfered if they had removed my ovary and fallopian tube left side. I am scared it will return at some point in my life.

I had a MRI scan waiting for results to see how much damage the cyst has done and if spread any further.

I am 43 years old I have other health issues and passed depression, also developing endometriosis. I cry and feel sad that I can not have a biological child and experience pregnancy it kills me inside. I made the choice to go down adopt route which I am in the process of adopting a child. If the worse comes and I may have to have a hysterectomy I still got to be a adopted mum.

I completely understand that for some women adoption not for them. My partner trys to understand but when you are not a women you can't feel a women pain not being able to carry for whatever reason.

You have to do what's right for you and only you can make that decision its a difficult one but you will make the right one. Sometimes things happen for a reason in our lives.

I wish you all the best and hope everything works out for you.

💜

Thank you for your reply.I'm glad adoption worked out for you. It probably something I will look into it. However I suppose I need to look at my health first.

I felt I really had to respond to this because I had a hysterectomy and oopherectomy 18 years ago and also have had several excision surgeries with one of the top specialists in the country. I still have endometriosis. It really is horrible to go through all that and still have a life of pain. There is no guarantee at all and I was told that removing the endometriosis is key and not the hysterectomy. A good specialist will try to preserve your organs and remove the disease.

Obviously this is all very difficult for you in terms of deciding. I just wanted you to be aware. xx

Jasmin24 profile image
Jasmin24 in reply to Dogmad6

I am looking into different types of hysterectomy, and getting ready for a clinic appt, to discuss the options.I think I have to be realistic about life.

Thank you for sharing and the advice.

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