Hysterectomy or not?!: Help! I'm waiting... - Endometriosis UK

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Hysterectomy or not?!

Meeshka profile image


I'm waiting on a further specialist appointment after five rounds of zoladex as it's been a nightmare, pain, no pain, more pain, no pain and bleeding. I have a feeling the specialist might recommend a hysterectomy. A total one. What's people's opinions please?

I've read very varied reports. I'm 34 and know I don't want children. Any advice would be greatly appreciated.

14 Replies

Hi. I'm sorry your feeling this way. I'm going through the exact same but I asked for a hysterectomy. I'm 27 and have been suffering most of my life, I can't have children so I hopin ang praying I get the hysterectomy, my mum had the same and when given a full hysterectomy her life improved so much and has not had a problem since. I know everyone is different but in my opinion if it will help get our life's back it's worth it. Xxx

It is a really tricky decision. I had a total abdominal hysterectomy and both ovaries out in Feb 2015 but been in worse pain since. It's been constant and every day and just about controlled by tramadol and duloxetine.

My advice would be to make sure your surgeon is a bsge specialist and will excise all endo at the same time because if they leave it behind, as in my case, then it carries on growing and causing problems.

I should say I did have adenomyosis as well as endo and had been told I would never have had children and was 42 but it's really not an easy decision

Take a look at hysterectomy associations website for loads of useful help and advice about the op.

Best of luck

I got a total hysterectomy 2 weeks ago. It was a hard decision to make especially because I never had kids. I'm very happy with the decision. Since surgery I have had zero bleeding and zero cramps. Something I literally never imagined was possible. I know it's not a cure for endometriosis but it does stop the bleeding that for me had become non stop. I went to counseling for a few months to accept my decision. It has been a great thing.

Hi, l am really sorry that you are facing such a huge decision so early in life. I had a full hysterectomy and both ovaries removed in April. I had some worrying symptoms which meant they could not rule out ovarian cancer and because of the endometriosis it was almost impossible to extract the ovaries without open surgery. I was given the option to remove the ovaries first then test and assess if a hysterectomy was still necessary. I have a son and at 42 l was not planning to have any more children - so l decided l need completion after 18 months of worry and increasing pain. The operation went well and l was able to leave after 3 days. Since then l have had no pain at all. I had Ando too but l have no symptoms at all. I was reluctant to go onto HRT but after some research l am now on a low dose which I probably will continue until the normal age for menopause. I didn't take HRT straight away so went straight into full blown menopause after about 10 days post surgery. That was pretty difficult emotionally and physically. Looking back l probably would have taken my consultants advice and started earlier. I think the most important thing is to get the best consultant you can even if it means travelling further for treatment. I had Mr Clark (Birmingham Women's Hospital) and he was brilliant throughout. Take care. Thanks Kathy

It really depends on so many things and it is (or should be) an absolute last resort after everything else has been tried. I am due to have a hyst + BSO + excision surgery in March but I've had 2 surgeries, none of the drug treatments have really been able to control the bleeding or pain, and due to the extent of my disease, a surgery to just excise the endo isn't really appropriate. I've also had the hyst recommended by 4 different doctors including one of the top rated bsge surgeons.

My understanding is that removal of the uterus alone will only help if you have adenomyosis. Removal of the ovaries does seem to help but only if all endometriosis tissue is excised at the same time and having your ovaries removed leaves you with a whole new set of health problems so it's a question of what will be the lesser of 2 evils, the endo or the surgical menopause.

Exactly, could not agree with you any more. xx

Thanks everyone so far.

I know really it's a last resort to have a hysterectomy at my age but I certainly can't carry on the way I am. I end up in tears at work due to the pain, painkillers, anti inflamatories and any other drugs don't seem to work, and I'm not keen on taking pills for the rest of my life like those anyway. I've had three surgeries to try and rid me of this tissue.

I really don't know how I'll cope with the menopause and I guess there is no way of knowing until it happens. Zoladex was supposed to set on a menopause style effect and to be fair I haven't suffered anything. However I've had two small periods since I've been on it, one now and the pain is agonising.

Other than full hysterectomy I don't know if there's any other options. I'm just sick of feeling like guinea pig 'oh we will try this or that'. I'm done feeling like that.

I had 3 monthly injections of zoladex - the first 2 months did help but on the third the pain came back. My Gynae just said that the zoladex wasn't working and that I may as well give up on it and that a hysterectomy was the next step. To be fair my Gynae has been quite dismissive even though I've had bladder & bowel symptoms he never looked into that, so I've not been very happy with how I've been treated. I'm going down the route of a second opinion now at a BSGE Centre (appt 12th Jan). For me I feel a hysterectomy is a last resort so I need to be sure there's nothing else that can be done x

Like others have said it is a big decision and there really is no right or wrong answer. Unfortunately with our condition it seems to be just a matter of weighing up as many pros and cons as you can, take the medical advice and then decide what feels best for you. I went in for a total hysterectomy with oopherectomy in November. I had done as much research as I could (the hysterectomy association website is really great, with a great little book 101 Tips For A Happy Hystetectomy), and had drawn a line under having a family of our own after several rounds of IVF. I felt it was the best chance I had of regaining some quality of life. My endo is very aggressive and wide spread so I understood there was no guarantee it would achieve the results I hoped for, but I felt it was my best option. Unfortunately, things were more complicated than expected when they opened me up, but they did manage to remove my ovaries and tubes. My uterus and cervix were too effected to remove safely. However, I'm still hopeful the ovaries removal might help. It's now just a bit of a waiting game for me, and my consultant is going to arrange sone more regular monitoring to keep an eye on the remaining endo to see if dies back as we hope, or continues to grow. I am not really having any menopausal symptoms yet, apart from the odd mild night sweat, so have chosen not to take HRT at present. 5 weeks post op I'm doing well with recovery, feeling pretty good though a bit tired. Although things did not go according to plan I'm still glad I went ahead with it and feel like I'm at least trying to take some control over this awful condition.

I wish you all the best. Read up as much as you can, get all the information and advice you can, hope you have a consultant you like and trust. And do whatever you feel is right for you. Trust your gut instinct. No easy answers unfortunately. Wish you well for a healthy and happy new year.

total hysterectomy doesnt cure endo!

Please make sure you are referee to a BSGE centre! Don't let a general gynaecologist treat your endo!

Its a lifestyle choice in your case. I can see you wanted to take control of your life which is a good thing. Make sure it's done in a SPECIALIST HOSPITAL wherein the surgeon are BSGE specialist. All the best in your decision.

Went for a specialist appointment on tuesday as I was in so much pain. My usual specialist is on leave so it was almost a second opinion. He has agreed that I need a hysterectomy. However, because everything is so fussed together he is now going to refer me to someone even more specialised. So it's the waiting game AGAIN until next Friday when I can be seen.

I've got new pain mess but since he has scanned me I am finding it hard to sit or stand for long periods of time, I'm very sore still but am taking my medication at regular times.

Fingers crossed.

So, I'm being sent for an MRI scan next week, the specialist says he will grant me surgery after that

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