I would really love to hear from warriors who had a hysterectomy in your 30's please. Im 39 and terrified of the prospect. Particularly mental health, weight gain and not being able to have sex. Have you suffered these? Do you regret the decision?
I have adeno and endo, extensive with kissing ovaries. Bsge expert gynae has said I may as well get hysterectomy as I have kids. But I really don't want one unless it's life threatening. Waiting on Mri results to show the extent of disease. I'm really spiralling and feeling so depressed. Horrific pain and fatigue before my period isn't helping. I've had thyroid cancer and my thyroid removed which has wreaked havoc with my life taking synthetic thyroid hormones. I really don't want to have another vital organ removed and induce early menopause as i need one ovary gone too. Any advice greatly appreciated.
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DarkStar85
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Hi, sorry you are struggling. A hysterectomy will stop pain from adenomyosis, and you won't have periods.You mention removal of one ovary, if one remains you won't go into menopause. But you could still have issues with endo as estrogen can feed it. Have you explained your worries to your consultant? Have you tried zoladex injections or similar? My pain and symptoms disappeared for me with zoladex (with add back tibolone) and that's how I know total hysterectomy is right for me. I however don't have extensive endo and bowel and bladder aren't involved, but pain is horrendous so it was an easier decision for me. I haven't had a date for mine yet so can't tell you about afterwards. However, a friend had a total hysterectomy, she had kissing ovaries and extensive endo with bowel involvement, she is a completely different person now, pain and other symptoms gone.
I hope others reply to you too as everyone has a different experience.
Thanks for your reply. I see consultant in 2 weeks time for my mri results so I will talk in details about it then. I haven't tried any treatment so far, I told him I don't do well with hormones so he said may as well get hysterectomy instead of several surgeries down the line. Best of luck with your surgery, hope you have a speedy recovery.
They all push hysterectomy unfortunately, I was told it was my only option, but I got a second opinion and now have prostrap injections with no issues at all. He's said I can have it for as long as I want it too. I have adomyosis, endometriosis, cysts and fibroids. I hope this helps sending you a big hug too 🤗
I'm in a similar situation. I'm 40 but have no children. I have adeno and endo and have been put on the waiting list for a full hysterectomy. I was in complete shock at my consultation but now, having had time to think, I don't want to go down that route. I've also been diagnosed with ulcerative colitis and have started seeing a herbalist and nutritionist. I'm waiting on biopsy results from a colonoscopy but, once I get them, my plan is to see a private consultant for a second opinion. It's one thing to remove what shouldn't be there but it's a completely different thing to get organs removed. Nobody should do anything that they're not comfortable with. You do you. Sending love.
I was the same as you, shocked at how blazé he offered major surgery! Yes I agree, I'd rather get rid of the endo and keep other vital organs in place! I'm on a rollercoaster already after having my thyroid removed. I don't want any further organs removed unless life threatening, which it was the case for my thyroid. Good luck with your treatment.
Hi, I had a total hysterectomy and also oopherectomy at 45. I had extensive involvement of other organs, bowel and bladder, very bad. It was not the cure I had hoped for. There was some improvement, especially with my mobility for a few years but I have continued to suffer from horrendous excruciating pain on many occasions and also bowel, bladder and digestive symptoms. It has been over 20 years since my hysterectomy. I didn't gain any weight and didn't find the menopausal symptoms too bad, easier to cope with than endometriosis pain. I did not have any HRT of any kind and never would.
Hysterectomy in itself will not cure you. You would need your endometriosis removing at the same time which I did. I've had numerous operations to remove it, major surgery since the hysterectomy. It helps but only temporarily. I've used Zoladex very successfully.
If I were you, I'd definitely get a second opinion as you shouldn't be presented with just one option. There are various alternatives out there as others have said.
Sorry to hear you still have pain. What an awful disease to have major surgeries and still no cure. Do you currently take medication like progesterone to help progression? It's so horrible to hear women still suffering after so many procedures. I will talk through all the options with the consultant. He is clinical lead at a bsge centre, there's only a few in Scotland so I reckon he must be one of the top consultants. I know Drs are all too happy to go straight to surgery, especially since its private.
Thanks for your message. I'm glad you have a top specialist. I wish you all the best. It's a horrible illness to have and life changing for many, certainly for me. My mobility has been affected, I get pain from my pelvis and into the tops of my legs. I don't take any hormonal treatments at all currently. I did have Zoladex for years and it was really helpful but not great for your bones so am having a break from that currently and managing with Cocodamol for my pain. xx
I had a hysterectomy in my 30s due to very heavy bleeding, they left in my ovaries . I felt fine afterwards, it took a while to get back to normal, about 5 weeks, everything was normal functioning. A few years later I had a ovarian cyst, it took forever to diagnose because I didn’t have periods that help with diagnosing symptoms, anyway they eventually found out via a scan, I then had one ovary removed as I was paranoid about being plunged into menopause but everything was fine.
Glad it worked out for you. I'll be happy to have the excision surgery but don't want to loose organs unless I really need to! I have 3 young kids to run after so if I can avoid major surgery recovery I will!
Hello I had a hysterectomy in my 30's and ovaries removed in my early 40's. Both were challenging to recover from and surgical menopause comes with its own issues. However i would say my quality of life is much better now than it has been my whole adult life. I am no longer I pain, no heavy periods and my sex life is definitely better. I've not gained weight but I have totally changed my lifestyle including eating so that could be why. Downsides are having to take 3 typs of HRT every day, and having to pay privately for some of it because the levels are not licensed through the NHS. It costs me about £1k per year for this and the blood/ bone tests etc. I'd rather keep well than fall apart and need fixing up down the line . I hope one day they will sort it out so I don't need to pay twice. Also I am no longer able to tolerate alcohol. It is a huge decision with lots of unknowns but I consider myself lucky to have a new lease of life. I wish you well with your decision. My pain had got so bad I couldn't function at all so it wasn't a hard choice for me.
Thanks for your reply. Glad to hear you have a new lease of life! How did you know you needed such a high dose of hrt was it just trial and error? Hrt does scare me a bit si ce I've had cancer, albeit not breast cancer. You're right, it's such a big decision with so many life altering variables. Glad it was a good outcome for you.
Hi Yes trial and error. Very slow only changing after at least 3 months. I'm on lenzetto now and on a lower dose than I was with the patches. I absorb it better though I think but have to use it at the same time every day or I see fluctuations in mood, temperature and fatigue. I have yearly blood tests to check all on track but the doses were prescribed based on the level when my symptoms were manageable. I dont see my HRT as adding anything that shouldn't be there naturally- if my ovaries were still there. I do get that having had cancer would make you nervous though. Lots of research might help you to decide either way Good luck
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