GnRH Injections & Mirena Coil

[Chloejams]

Hey all,

I have spoken about this at great length with my friends & partner but obviously unless you know what it feels like, it's hard to give an opinion.

I had a laparoscopy in June 2022 where I was diagnosed with Endometriosis and had the majority of it removed. The hospital I had this done at no longer has a Gynaecology department so I have been moved to an Endometriosis specialist clinic.

For context, I get pain/pressure, headaches, extremely increased bowel movements & vomiting when I have an Endometriosis flare up. The laparoscopy provided a lot of relief but slowly the symptoms have been coming back & my specialist is reluctant to do another laparoscopy so soon after the previous one.

She has recommended me trying the GnRH injections alongside Tibolone. I already take Amitriptyline 30mg ON & she has said I can increased to 40mg & then 50mg if I need too. I also have the Mirena Coil (I had this replaced during surgery so have had one non stop for 7 years now and I don't bleed whatsoever). I have an appointment to have the injections but I feel very uneasy about this.

Since New Year I have been following a anti-inflammatory diet, exercising more regularly and generally trying to lose weight. I feel like my symptoms are improving quite significantly, especially the bowel ones which I guess is just down to the more plant based less processed foods I'm eating. Whilst I still have pain either in my stomach, sciatic pain or leg pain, probably daily, maybe every other day, it is much more tolerable.

With this in mind, I feel like GnHR & HRT are a lot to put my body through, & whilst my current endo symptoms aren't that bad potentially the side effects from the medication could be much worse? I'm 31 and have no children. I am getting married in September and so I have quite a busy year ahead and don't want to cause issues for myself when I'm currently coping quite well.

On a more superficial level, I'm also really struggling to lose weight & scared that the injections will cause weight gain! Also, may sound stupid but if you have the Mirena & GnRH + Tibolone - is there a possibility I could start bleeding again?

I guess I just want to hear peoples experiences & what you would do - I know ultimately it's my decision but would feel more prepared having spoken to people who actually *know* how I feel!

Thanks so much!

[Angelnurse]

Hi Chloe, I was on Decapeptyl 3 monthly Injections and tibolone for 5 years it was extended due to lockdown yes you do have side effects but for me they only lasted a couple of days at either side of when injection was due. I last had a 3 monthly injection in August 23 and I am now having an endometriosis flare up and would go back on injections in a heartbeat. I'm 51 they thought I would be in a natural menopause by now but I'm not, I am on gabapentin, amitriptyline, naproxen and codeine, all for chronic pelvic pain. My motto is you won't know till you try, and having a flare up currently absolutely anything is worth a try. Good luck and take care xx

[Chloejams in reply to Angelnurse]

Thank you for getting back to me! That's very helpful to know! You too - I hope your flare up doesn't last too long xx

[Pinny27]

Hi I had excision lap for stage 4 endo with a bowel resection in june last year and within 2 months was having monthly flare ups. I alsp have the mirena coil and have been on it since nov 2020 and have only had occasional spotting, no periods in this time. My specialist also was reluctant to consider surgery because of the time frame so suggested Prostap injections once monthly. I was really anxious about having them once I went home and researched them. However the pain was lasting for 2 weeks and happening frequently that I was willing to risk the side effects. I've only had one injection so far and I'm finding its really helping me pain wise, I've only had niggling pain once in my ovaries and not had any spotting at all. I had a strong ache in my knees for the first few days but started taking Tibolone and it eased off quickly, I still feel the ache but its dull.

I totally understand youre reluctant with upcoming plans but my endo nurse told me to try them and you can always stop if youre having an awful experience, its only temporary and everyone reacts differently. This really eased my mind and I decided to just try it. I havent had a flare up since being on them but again I've only had one and I'm due my second next week. I think you have to see it as if the pain is that bad its effecting your daily life vs potential menopause symptoms and hopefully no flare ups. Hope this helps 😊

[Chloejams in reply to Pinny27]

Thanks so much for coming back to me! My specialist said the same, she won't force me to continue if I have awful side effects. It does help definitely! Thanks again x

[Sunset-lady]

Hi, if you are managing your pain through exercise and diet (which I did for years until peri menooause) then I wouldn't put your body into chemical menopause even with Tibolone addback HRT. I'm on zoladex because I'm hemorrhaging every day. So far (second month) it's not working and I'm anaemic. If you are in agony then these injections are a way out of the pain but I tried everything first. I'm not in pain just bleeding and I can't have coil or hysterectomy due to advanced endometriosis. Keep this pathway as an option but I'd push forward with a natural approach first before you go on this.

[Chloejams in reply to Sunset-lady]

Thanks for getting back to me! Yes this is my thought process, my pain isn't too bad at the moment! My specialist is happy for me to wait until April to see what life is like then! Thanks for your help x