Hi there I've had endometriosis for 20 years now,had mirena coil 15 years. I had coil changed in march after failure ablation surgery,I've been still am having a period with bleeding every 2 weeks. I'm starting prostap injection and hrt patches tomorrow. I wish gynos would listen to patients,it's our bodies we are ones in pain.
Has anyone been on same treatment
Thanks ☺️
Hiya
I too have had endometriosis for over 20 years. Have tried the mirena coil several times over the years but it never relieved my symptoms.
I have been given the prostap injection whilst I now wait for a hysterectomy and removal of endometriosis on the rest of my organs. I’ve been on it over a month. I can honestly say it has helped so much with my PMDD and pain. Despite still having a very heavy period and spotting. Im hoping the bleeding will lessen the longer I am on it.
I hope you find some relief with it too. Have they discussed a hysterectomy with you at all? Xx
Do you start bleeding when on prostap? Yes but as overweight they'll not do it. I've asked for 20 years for one x
My periods were extremely heavy before I was put on prostap. I was advised that for the first month especially whilst my body adapts that my period could be lighter or heavier. I’m hoping on the next one it won’t be so bad.
The pain. Bloating. PMDD has all improved so much. I am glad I have given it a go. Let me know how you get on xx
Hi I'm on prostrap, had bleeding for 3.5 weeks with first injection, then after 5 injections had spotting for 3 weeks, but nothing since. Been on them since August last year. The only annoying thing is that I have gained17 pounds in weight 😒
Hiya.
Has it eased your endo symptoms? That’s a pain, I was hoping I wouldn’t gain any weight but I don’t think that’s going to happen🙈 are you on HRT too?
I am spotting too, but I’m ok with that as long as I’m not having the pains I was. Xx
Hi not on hrt haven't needed it, and it can cause bleeding so thought stuff that. No pain at all now,and no bleeding, the weight thing is frustrating but i haven't gained anything for about 6 weeks now so I'm hoping there won't be anymore. But i can function, i was bleeding so badly before i had to have a bood and iron infusion, then horrible iron tablets not good with ibs. Xx
Oh and i take vitamin d tablets too x
Ah really. That’s good to know. Maybe it’s levelling out and your body is adjusting. It’s good that your periods have stopped. I’m hoping mine will do the same. Prior to this my periods were unbearable I wasn’t able to function like yourself.
You’re periods sound horrendous. I know what you mean about the iron. They do irritate your bowel. I hope things continue to improve for you xx 😘
Thank you so very kind indeed. I hope it works well for you too. I was getting so depressed, the injections are life changing. Sending safe hugs x🤗
Thank you. I was too, I was despairing really and feeling quite desperate seeing no way forward. So I’m glad I have given it a go.
Good luck with everything xx
Thank you, you too x
Hiya
Ah you might not have one at all then if you’re body is not used to having them.
Good luck with it and yes let me know how you get on xx 😘
diagnosed 18 years. Mirena gave me my life back for years and I am a fan. Had Zolodex for the the third time. It’s worked great and then I realised I am in perimenopause and Gyne gave me a HRT patch. Before I had zolodex with a HRT tablet called Tibilone, eased a lot of the injectio symptoms.
They love to try things, unless you give them an intellectual argument they don’t often listen.
My current Endo Specialist is amazing and involves me in every decision. So many of us are traumatised by Drs. I defo have been and take diazepam before every appointment. 💪🏻💛
Hiya
I know how you feel regarding the doctors. Did you have any side effects from the Tilibone HRT? I have been prescribed that too but am reluctant to take it, for various reasons. How are you finding the HRT patch? Xx
No side effect from Tibilone and the biggest reason I took it was it guards against osteoporosis as they are only licensed for 6 months. I felt great on it! Evorel Conti 50mg is heaven….once I worked out how to stick it down on my skin 🤦🏻♀️😂🤣
Aww thank you for sharing. I’m glad you are seeing the benefits from it. 🥰
When I was initially put on the HRT which were patches I kept losing them I think they were sliding off due to how much I was sweating 🙈😂. I was then prescribed the spray. Which I had to stop due to some of the side effects.
The reason I’m reluctant to take the Tibilone is that my Mum passed from breast cancer and I’ve had nothing but problems with mine. Including a scare just recently. So I’m trying to find other alternatives instead, which is a minefield on its own 🙈
Thanks for getting back to me about it I appreciate it xx
Injection taken hrt patch on,on 8 antibiotics a day and steroid cream for h.s cysts related to periods🥴 it really does suck being a woman. They've given me morphine for pain as nothing else works xx
Oh wow, that’s a lot. You are going through it aren’t you? How do you get rid of the cysts (if you can at all?)
Hopefully you will see some relief from the Prostap injections. Fingers crossed 🤞 xx
The cysts come from lymthnodes through armpits,very painful. But I had 5 surgeries to remove from behind ears and head. I take antibiotics everyday and get dressed my doctors xx
just make sure your specialist is a BGSE accredited surgeon. Expert in excision. Ablation is known for causing Adhesions. Check your hospital is a BGSE accredited centre aswell. Under the NHS right to choose you can ask to see a surgeon if your choice at a centre or hospital of your choice. Cutting it out has been noted in scientific papers as the best way. You need to read their profile and check they have years of experience. Knowing this, saved my body being messed up and dragging stuff out. Hope it helps.
Mirena coil and HRT, severe Endo 
Remove the coil and get the injection/implant or stick it out. Feeling trapped :( 
Coil or not to coil 
