Stage 4 Endo and Adeno. Prostap making this worse not better.

[Loki1980]

I have had my second Prostap injection on 18th November 24. I have since had 3 periods with large clots, every bone in my body aches, depression and mood swings. I'm on HRT which I'm not sure is doing anything? Any advice would be appreciated as trying to get hold of anyone at the hospital is a nightmare and GP has no idea? Is this normal? Will it improve with more injections?

[TennisCourt]

Hi! I was on chemical menopause (2 Prostap & 3 Zoladex) for 5 months and unfortunately it just didn’t work for me.

I went from having 1 period a month to 3 periods for 5 months with as little as 2 day gaps inbetween. They were all proper periods, with heavy bleeding and excruciating pain.

I have both Adeno & Endo.

I kept gettingtold to keep going it will work but after 5 months I absolutely had enough. I’m 27, it was hard enough being in the menopause as it is never mind bleeding 95% of the time for 5 months!

I was on HRT, I was on patches and then got swapped to gel & tablet. I felt like I was in constant brain fog and had flushes but apart from I didn’t have too bad menopause effects.

No one can explain why I reacted like this but unfortunately all birth control I’ve tried makes me bleed a lot so I just don’t get along with artificial hormones!

I have seen some women say it can take up to 3 injections to help. I would just say you know your body, if you feel like you’ve had enough, stop xxx

[Loki1980 in reply to TennisCourt]

Thanks it’s good to know I’m not alone! My endo nurse has finally got back to me and they have suggested I have no more prostap injections instead they have suggested provera tablets and HRT tablet until injection wears off in February. Hysterectomy would sort this out but on a waiting list like everybody else. So debilitating at times trying to hold a full time job and look after a family.

[thebird1 in reply to Loki1980]

Hi, I'm on the same position. Working, looking after family, in medical menopause but struggling ! I've had 7 injections( Decapeptyl) now but I don't think it's working. I couldn't tolerate Tibolone ( tried for a month) as it flared everything up. I've not tolerated any contraceptive tablets/ mini pill either. Although I'm on injections estrogen gel just flared it all up. Even vaginal estrogen!! I've emailed and called the Consultant's secretary but had no response ( 5 weeks ago). I'm also on the list for a hysterectomy and oophorectomy. I'm a bit concerned that vaginal dryness will continue mind!!I don't know whether to come off the Decapeptyl as they wanted me on it to prepare for surgery.......

[Loki1980 in reply to thebird1]

It’s just rubbish the level of trial and error I know we are all different but it definitely feels like “go on try this one” no real explanations, constant battles to get answers or guidance about how these things will affect you. Not started new medication yet or the tibolone, will just have to see what happens with this. I’m bet tempted to just go back to the way I was as none of this solving anything. I’m not going to get surgery anytime soon as like many women on here had to fight for my diagnosis so only just put on waiting list! 😔

[Chartolfrey]

It took 3 injections for me and since they have been brilliant. I was on hrt tablets but now patches. I also have endo and adeo and waiting for hysterectomy

[thebird1 in reply to Chartolfrey]

Does the HRT not flare up the endo? Unfortunately it has for me. My consultant said I could stay on injections and HRT until 50yrs ( I'm 47) rather than have hysterectomy. If you're doing well on them I wonder if you'll need the hysterectomy? Just a thought. We're all different aren't we!

[Chartolfrey in reply to thebird1]

I do nees the hysterectomy. Ive got endo, adeo, x2 endemeteiomas, fibroid and my ovaries are kissing with the bowels inbetween. Ive been told i have to have a full pelvic clear. Im due to have ny 10th injection tomorrow and ive come off tiberlone amd i do have patches but i had a month no hrt and ive felt so much better even sleeping now. The hrt didnt cause flare ups but few days before next jab due i do get some pains back and a few days after the jab

[thebird1 in reply to Chartolfrey]

Oh bless you, that sounds awful. Why did you come off Tiberlone? Sorry if you've already said! That's interesting about the pain before and after the jab. I have pain the week before. I'm waiting for full clearance too. I'm not on HRT. I'm feeling a bit rough at the moment really but hey ho! We are all waiting! Hope you get your surgery soon x

[Chartolfrey in reply to thebird1]

I was on tiberlone for 8 months and for 6 of them months i had bad insomnia, still sweats and alot of emotional breakdowns. Come of hrt the last month and ive slept every night and only cried 1 or 2 times. Im gonna try the patches as ive had a few headaches this week but i do have alot going on at home aswell.

I hope you get sorted soon, its a pain we go through this but takes so long to sort us out x

[thebird1 in reply to Chartolfrey]

Gosh, it's not easy is it. I'm struggling without HRT but not all the time. Lack of energy/fatigue at times which I find frustrating. Usually I just get on with it but it floors me at times.Hoping you are soon sorted too! X

[Chartolfrey in reply to thebird1]

If things dont work or you still dont feel right keep pushing them. I used to say to my friend i cant bother them but she said if i keep leaving things i get worse or they will leave you longer as you can manage. My endo nurse who does my monthly injections is lovely always asks any concerns or problems. Writes to my dr or consultant.

Fatigue/energy is a hard one and as women we just try to keep going. I understand as ive got 2 kids, luckily they are 21 in 2 weeks and lives with her boyfeiend and my son is 15 so they help look after me