Continued pain after hysterectomy..?

[Auntybetsy]

Hi. I have been told I need a hysterectomy due to adenomyosis and endometriosis but does anyone know whether you can still get cyclical pain ie when your period should be, due to endo, afterwards? Also is it best to leave the ovaries or remove them? I’ve heard removing them depletes your libido ...!?

Thanks

[RicEndoUK]

Hi Auntybetsy,

These FAQ's from the Endometriosis UK charity website may help with your questions:

How common is recurrence of endometriosis after having a hysterectomy/menopause?

This is not common. It is more likely after hysterectomy if the ovaries have been left behind with or without disease. This can happen sometimes because endometriosis surgery can be very difficult. Endometriosis after the menopause is thankfully rare as a result of markedly reduced ovarian oestrogen production but can occur when HRT is used.

Do I have to have a hysterectomy? Will it cure my endometriosis?

Hysterectomy treats endometriosis ONLY on the organs that were removed. If the endometriosis confined to womb and the period pains are only due to this condition, hysterectomy would minimise those symptoms. If any endometriosis was left behind, or was growing elsewhere inside the body, you may be likely to continue to experience symptoms.

Every person is different. I know some have continued pain after a hysterectomy and others have had good results.

RicEndoUK

Volunteer Moderator

[Auntybetsy in reply to RicEndoUK]

Thank you so much for your reply. I suppose it’s all a bit of a gamble but there’s not really any other option. I have had endo on my bowel so doesn’t really bode well. Thanks

[Sparklyjo]

I had a hysterectomy 5 years ago and although the bleeding has gone, im still in pain all the time and at the end of the month i get hormonal , grumpy and more pain!

[Auntybetsy in reply to Sparklyjo]

Oh you poor thing. How horrible. May I ask did you have your ovaries removed? X

[Sparklyjo in reply to Auntybetsy]

Nope because i was so young they wouldnt. They are trying to make me now but i wont, im still ony 37 and cant mentally handle menopause, i had the decopytyl jab with and with out hrt and it was bloody awful so i refuse. They are getting pissed off with me tbh. I will keep popping painkillers lol. At least i dont bleed like im dying too now xxxx

[Auntybetsy in reply to Sparklyjo]

I suppose not bleeding so badly is one thing to be grateful for! I’m severely anaemic and they won’t give me an infusion so a hysterectomy will help there. Do you mind me asking, what painkillers do you take? X

[Sparklyjo in reply to Auntybetsy]

That will help you no end, why wont they give you an infusion? I take cocodamol or codydramol, i cant take aything like ibuprofen which is a pain. I have tried tramadol which was ok but is highly addictive so even on the highest dose i needed more , i stopped taking them one day for that reason and i had withdrawals really bad i honestly though i was dying lol i then had amitriptyline which worked pretty well and it helped me sleep which i dont do lpl but the side effects are bad, you take one and up it every week till the highest dose you can stand the side effects i managed 2 cos they send me dizzy 🤣 so im back to the first painkillers, though im back at the hospital tomoz . Xxx

[Auntybetsy in reply to Sparklyjo]

Hope it went well at the hospital...? Those drugs sound awful! I have mefanemic acid which I take with paracetamol but it doesn’t work! Not sure why I keep taking them lol. Xxxx

[Sparklyjo in reply to Auntybetsy]

Thank you , had to rearrange it 🤦‍♀️ i think we take the tablets because it psychologically it makes us feel better lol have you tried the transemic acid? Im glad i had my hysterectomy cos i used to bleed really really bad so at least i dont have to worry about that lol how do you feel about everything?? Xxx

[Auntybetsy in reply to Sparklyjo]

I’ve kind of come to terms with the hysterectomy but I’m just not sure whether to have the ovaries removed! It’s supposed to switch of your libido!! Xx

[Sparklyjo in reply to Auntybetsy]

I certainly wouldnt have them removed hunni. Thats what they are trying to make me do it but having had the jab and i was horrid , felt awful and never had sex lol xxx

[Auntybetsy in reply to Sparklyjo]

Thanks for the advice hun I will keep them in and see how I get on. Eek! Xxx

[Sparklyjo in reply to Auntybetsy]

Good luck sweetie xxx

[Auntybetsy in reply to Sparklyjo]

Thanks love xxx

[StefaniaJW]

If you remove your uterus there is no reason to keep your ovaries. As long as you keep them, they will product estrogen and make endo grow (which can grow from stem cells and not necessarily from the endometrium).

Removing the uterus is helpful for adenomyosis, but endometriosis can come back (especially if the hysterectomy was not accompanied by excision surgery of ALL of the endo tissue). Unfortunately, if the hysterectomy was not performed by an endo specialized surgeon, endometriosis is probably still there and growing.

You need to consider taking Visanne or other progesterone-only drugs and discuss an oophorectomy with a specialised endo surgeon with extensive experience.

Also, the more surgeries you have and the higher the chance of endo growing and developing even more if surgery is not performed by experts.

[Auntybetsy in reply to StefaniaJW]

Thank you for your reply. My gynae is a specialised endo surgeon which is great. I have read that removing your ovaries reduces your libido and obviously you go straight into menopause xx

[StefaniaJW in reply to Auntybetsy]

Of course it reduces libido and you go into menopause. But either that of you need to take birth control or other hormonal treatments, otherwise endo will grow. That's what I was trying to stress: endo will continue to grow as long as there is estrogen. That's the way it is.

[Auntybetsy in reply to StefaniaJW]

Ok thanks for your help.