Full hysterectomy and I’m only 26 :(

[Coral07]

I’m just popping in here to try and get as much insight and advice from women who had had a hysterectomy because of endo, I’m only 26 I’m single and don’t have children (not too sure if I want kids yet) I’ve got stage 3 and I’ve already had Multiple surgeries even by endo specialist (supposedly the best) and I only get about a year of normality and it’s back! But this time it’s like it’s literally killing me im slowly wasting away both mentally and phisically. I’ve already tried everything including Medical menopause which only made my pain worse it’s messed my mental health and left me with lasting menopause symptoms (hot flashes, night sweats, dry hair and skin and bad mood swings) and after seeing my a new specialist last week he said “”look we don’t know what else to do I’m guna put you down for a hysterectomy but the chances are you will suffer the same as you are now”” I’m lost?!! I literally don’t know what to do I’m getting 50/50 emotions from people who have had one and feel amazing and ones who have had one and regret it ever since💔 any advice would be massively appreciated, thankyou❤️‍🩹

[Debsturbo]

please please please don’t do it!! I had a full hysterectomy a few years ago and I’m still in agony with endometriosis. It was me asked for the hysterectomy because I couldn’t handle the pms symptoms any more, they were unbearable. I was 40 years old and finished having my family so I was sure. I woke up in a new world with no hormone problems, that side of things was great. But I’m still in agony and waiting for another laparoscopy. I’ve put so much weight on and i just can’t loose it, it’s a symptom of the chemical menopause. Which being too sore to exercise doesn’t help.

I know what you’re going through and it’s not nice.

But a hysterectomy won’t cure endometriosis and if you suffered bad symptoms with the mini menopause’s you might find they will all come back straight after the op.

[Hope4Future in reply to Debsturbo]

I totally agree, go on contraception back on back , don’t have a break so no bleed.

I haven’t a period in 5 years and I control the Endo this way

[Coral07 in reply to Hope4Future]

I’ve been on every contraceptive there is since 11 I’ve had 2 mirena coils and nothing stops my bleeding NOTHING!! I’ve been under 3 endo specialist and had multiple surgeries nothing has ever worked for me not even diets or exercise💔💔

[TennisCourt in reply to Debsturbo]

Hey sorry to jump in here. I know a hysterectomy won’t cure Endo, no cure but is it not worth it to stop them periods every month? Mine are traumatising but I don’t react well on birth control so I can’t be on it and it doesn’t not stop my bleeding. When on a period I would do anything in that moment to get them stopped.

So I understand it might not improve your Endo symptoms, but if it removes horrible periods is that a tiny bit worth it? Surely better then both Endo symptoms AND a period? You’re at least removing one evil?

I’m just curious, I am heavily looking into hysterectomy and Im just trying to understand more from others experiences! Xxx

[Debsturbo in reply to TennisCourt]

It depends on your circumstances. That’s the reason I had mine plus unbearable pms. I was an almost 40 with a son and a daughter. It was a very long journey dealing with my periods and when I was younger I begged for a hysterectomy and I’m glad they didn’t do it. Honestly, it’s a personal choice, there’s no guarantee the menopause won’t be worse. I tried loads of different contraceptive methods and I couldn’t tolerate any of them. Personally, I’d advise not to have it until at least my stage in life. I’ve gained weight that I can’t loose and brain fog messes with me crazy.

[JulesUK]

I can’t comment specifically as I haven’t had one but I do know that doctors are often quick to offer it as a solution which turns out not to be the solution so personally I would be cautious of doing something there’s no return from. Have you tried the Mirena coil?

[Coral07 in reply to JulesUK]

Yes I had my first one put in 2019 and it run out 2022 had a new one fitted September 19 last year and I’m still bleeding every 2 weeks and I’m the worst I’ve even been💔💔

[JulesUK in reply to Coral07]

I’m sorry to hear that. I hope you find the right treatment. x

[MrsPaddingtonBear]

Hello

People just don’t get how bad this condition can be. I’ve been going to the gynaecology for 20 years now. 3 weeks ago I had a total hysterectomy. Sadly for me due to scar tissue from previous surgery my bowel was fused to my womb so after a major medical emergency and a call to my husband saying it was 50/50 if I’d make it, I had emergency bowel surgery and a colostomy bag fitted. This will be reversed some time in the future. I too had all the surgery/ medication/ medical menopause/ hrt add back therapy. It wasn’t a decision my consultant wanted to make in a hurry, he waited two years. I have a long recovery ahead. If you have no scar tissue you shouldn’t encounter that problem. I also have family female cancer history and have had cell changes on my cervix twice so for me it was also getting rid of that risk. From the hysterectomy point I am at present doing fine. The other surgery is the major recovery, still taking morphine after 3 weeks, coming off that after this weekend. Hope you get looked after and supported well. Follow your heart. Good luck.

[Coral07 in reply to MrsPaddingtonBear]

I had surgery in 2019 and my bowel was abit stuck to my bowel then I had surgery in 2021 and my bowel was stuck to my bowel quite badly and they had to remove a massive flap of endo inside behind the bowel and since then my bowels have been so bad I’m scared to eat anything even if it’s endo friendly and healthy it right back out in 15 mins🥺🥺 so I’m deffitnly scared this is something that will happen to me I mean I don’t want a hysterectomy but my specialist just don’t have any other options to offer me so I’m just so lost☹️ And the fact I don’t have kids yet it’s just a terrifying decision to make, thankyou for you message ❤️‍🩹

[Giraffegreen]

I haven't had a hysterectomy but I do have endometriosis and a high probability of adenomyosis, which the only cure for is a hysterectomy, I am only a few years older than yourself but my specialist strongly advised against a hysterectomy at my current age, especially as it won't fix the endo part. He told.me.its because even with a certainty of not wanting children, many people carry a regret for having it removed and its like grieving. He also told.me even if they left ovaries I'd go into early menopause and would be at a high risk of cardiovascular disease and heart attack, I didn't know there was a link but he made it sound like I'd die prematurely. I understand the desperation truly I do having tried nearly everything under the sun to manage my symptoms with no luck but if you're already feel anxious and unsure give this serious thought, I hope this helps

[Marcia71]

I had a hysterectomy and ovaries out at 43 and regret it. Yes I did also have adenomyosis so it helped the heavy periods and flooding. But the pain was so much worse. Rather than a few days a month it was all day everyday. I had had endo sewn into the vaginal vault.

I’d find another specialist and a bsge centre to discuss other options. More thorough excision planned out with mri and transvaginal ultrasound at a bsge would be my choice if given the choice again.

[Debsturbo in reply to Marcia71]

I was and am exactly the same. Doctors keep telling me the pain can’t be endo because u have no ovaries but I’m convinced it is so I’ve been referred back to gynae again. I’m in pain every day now and I don’t advise anyone to have it for endo.

[Marcia71 in reply to Debsturbo]

Sorry to hear you're suffering too. I had to have 3 further ops after hyster to remove endo and finally 3rd one, 5 years after hyster really helped. I'm now 4 years on from that op and out of pain and doing ok.

[Gardenist]

Hi I'm sorry to hear that you have this decision to make. I was you almost 20 years ago with stage IV endo. I was sure that I did want to try and have children and so I asked to be managed conservatively at that time. I got about 2 years pain free after surgery and 2.5 years each time while pregnant and breast feeding before pain, fatigue and heavy bleeding would be back back. I had a hysterectomy 7 years ago, but kept my ovaries. It took me about a year to recover from that opp. A couple of years after that I was in the most horrific pain yet. 2 years ago I had my ovaries and my cervix removed plus more endometriosis that had grown. I'm now on HRT that I've had to fund privately and has cost over £1k so far, because the NHS is very bad at dealing with surgical menopause. I honestly feel better right now than I have my whole adult life. However surgical menopause is difficult and I feel much more fragile and reliant on medication, which is sometimes difficult to get hold of. Without it I feel very unwell and unhappy to the point of not wanting to be alive (and I have a lovely life and I'm happy. Its purely hormonal). I have found over the years that changing my diet, exercise, sleep and combating stress levels has really helped me both with symptoms and with coping. I can't drink alcohol or coffee and try not to have sugar or processed food. I need to sleep 8 hours a night and find intermittent fasting helps too. Trying to put 20 years into a few words is hard! What I'm really trying to say is I think sadly endo is a lifelong condition for many that you have to live with as best you can and do lots of research about each next step. I dont regret waiting for more radical surgery because I have 2 lovely children that are a gift, given the state of my insides. I am getting twinges now that make me wonder if the HRT is feeding more endo. We will see. There is no chance I could function without the HRT. I wish you well with your decision. Go easy on yourself and if you can I've found counselling has helped me over the years to accept the body I have and to celebrate what it can do. Its helped me to cope with the fact that around a third of my adult life has been stolen by the pain and fatigue of endo. The other 2 thirds have been amazing.

[Kieraface]

have they not given you two forms of contraception at the same time? I have just had stage 4 DIE removed and since I was diagnosed I’ve been on the nexplanon implant and norithestrone tablets. Before surgery I bled for 3 months solid and as soon as I added in the second contraceptive I stopped bleeding within 2-3 days. Since surgery however I have bled constantly but apparently that’s normal after endo removal. I also have adenomyosis so that causes pain and issues.

Maybe try two contraceptives at the same time. If you have a coil, maybe ask for a tablet too? I take norithestrone tablets every day without a break to try avoid having a period - less periods means less retro flow!

Good luck xx