Advice re the pill and endometriosis and fibroids

[Tina32]

Hello everyone,

I'm wondering if anyone can give me advice or has been in a similar situation before.

I had major surgery to remove endometriosis from the bladder and surrounding areas in 2015. After the surgery my consultant advised I start and stay on the pill to manage recurrence of endometriosis and related symptom

I was initially on Yasmin and now take desogestrel. A couple's of years ago I had a ultrasound that showed I have about 4-5 medium sized fibroids and the position of them as well as endometriosis on my kidneys has led to hydronephrosis and my left kidney to now be non functioning. I have previously had surgery to remove fibroids prior to the discovery of the endometriosis.

I was doing a bit of online research and have seen that the pill can cause fibroid growth in those with or a history of fibroids.

I am now considering stopping the pill as a ultrasound I had in January showed the fibroids had increased in size again. I am just concerned about the effect this may have on endometriosis spread as my consultants have always said I need to stay on the pill basically until menopause

Has anyone been in a similar position or has anyone been given the same type of advice re the pill post endo surgery? Or what are people's experiences of managing endometriosis post surgery.

Thank you

i

[Sleepy_Leopard]

Hi, I was given the advice to consider the pill post surgery for endo management. However I don’t get on with the pill and it really affects my mental and physical health negatively. I don’t have fibroids or kidney related issues so I can’t speak in terms of those. But I am personally going to try acupuncture and reflexology and an anti inflammatory diet to keep it stable. But as I said I obviously have had a different experience to you! I would maybe suggest you get more opinions from different doctors regarding continuing the pill and how directly it links to fibroids! best of luck xx

[Tina32 in reply to Sleepy_Leopard]

Thank you, all the doctors at the specialist centre I am at say the same thing in relation to the pill or just advise getting the mirena coil instead but I'll ask my GP for her opinion as well as she has been quite good over the years

[Lasa]

Hi I'm on the pill too have endo, adenymosis and fibroids ,but I was getting alot of pelvic pain with periods so still on the pill had a transvaginal scan picked up endometriosis with adehsions so I'm Gona try the postap injections menopause so that it shuts down everything then hysterectomy ,if u stop the pill unless anything in place the pain and bleeding be worse x

[Tina32 in reply to Lasa]

Thanks for replying. Yes I am concerned about pain coming back. When it was really bad I was in pain for 3 weeks of every month.

I had prostap before my last endo surgery. My consultant has recommended a hysterectomym I haven't had children and am hopeful to conceive at some point so that is notnkn the cards for me at present.

I hope the hysterectomy goes well of you have it x

[Lasa in reply to Tina32]

Hi thanks for replying I totally understand the pain u in every three weeks I'm like that and its like a knife going around the waist into the back.i had my kids early at 30 one after another and the last one took me three years to conceive so I'm done with having anymore.Im having the prostap next week could u tell me any side effects u had and did it help shrink any endo etc x

[Tina32 in reply to Lasa]

I'm 40 and hoping it's still possible for me to conceive. I need to meet a partner which is another factor lol. Life is complicated

I took prostap and the medication tibolone to counteract side effects for a few months before the surgery, it might have been for up to 6 months. My consultant told me that it did shrink the endometriosis but I can't remember how much of a difference it made.

I was quite lucky in terms of side effects. I had some hot flushes and night sweats on a few occasions but otherwise I was pretty much free of side effects. Are you also taking tibolone as well? I think it helps with supporting your bones also due to the potential for loss of bone density that can occur

[Lasa in reply to Tina32]

Hi I hope u meet someone soon and everything works out and yes don't give up u will conceive takes bit longer but it's possible.i was told with endo and adenymosis my third baby I had was a miracle told me my chances were very low.I haven't started the postap injection my first one is on the 12 th of August just read the side effects hope I don't get any other than hot flushes.The endo specialist did mention about they do a bone scan to keep an eye on that ,did u take any hrt for the flushes did it help x

[Tina32 in reply to Lasa]

Thank you, that is encouraging. I am trying to be hopeful despite the obvious challenges.

Yes tibolone was the hrt I took. I think it did make a difference as the hot flushes and night sweats were mild and not very frequent. It's good they are doing a bone scan for you as well. It sounds like your medical team are taking a good approach with you x

[Lasa in reply to Tina32]

Hi wish u the best of luck ,I met my partner when I was 30 took me a year to conceive then had another baby two half years ago when I was 39 .It was easier for me at 30 but last baby energy levels are low I did go on cerazette after 6 months so don't know how bad I got.Hopefully medical team know what they doing ,did u have the injection in tummy or arm and when did u feel the effects of it was it after the IST or second injection x

[Tina32 in reply to Lasa]

Hi, I always had the injections in my arm. My GP did them and she was good, I don't think it was that painful.

I don't think I had symptoms straight away. I think it might have been after the 2nd or 3rd injection and they really didn't last that long from what I can remember but I have read stories from other women who didn't have a good experience. I hope you don't have a negative experience. Just keep monitoring yourself and speak to someone if you start feeling off. You can always stop them if you really don't get on with the injections

[Lasa]

Hi thank you I'm very nervous because I read the side effects hopefully should be ok .I have to get mine down at hospital every month plus bone scan too,didn't know doctors can do it.iv read the forums and done my research so hoping I'm a lucky onex