prostap injections: i have been on prostap... - Endometriosis UK

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prostap injections

Prettythings1 profile image
8 Replies

i have been on prostap injections for six months

I am experiencing awful joint and muscle pains

Ibelieve this is a side effect

Also I am extremely hormonal and irratable

( it is not socially acceptable to drink wine at 8 an) Joking!

I cannot have HRT

Please will anything else help with the joint pain and iratibility

Thanks

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Prettythings1
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Moon_maiden profile image
Moon_maiden

Hi

Is that your last injection? It’s not licensed for longer than six, I stopped there as it didn’t help. Ideally you should get hormones tested now and if you come off, get retested in a month or so. See what the imbalance is and then easier to sort out. Endocrinologist would be better than Gynae for this. Still no idea why they don’t have one as part of an Endo MDT.

I know you were joking, but to feel like that first thing is an awful feeling to have. I take sage as an alternative to HRT.

Prettythings1 profile image
Prettythings1 in reply to Moon_maiden

thanks what is sage?

the gynaecologist, son, they would not give me a hysterectomy, and if they did, they would leave the ovaries in which to me, would defeat the object, because he would still be having periods, and it would still be an issue

I am not the easiest of patients with complicated medical history, so they don’t want to do surgery because I’m not the easiest so that is why they are happy for me to continue on this beyond six months she mention that you can be on it years

I know that long as it you were on it for the more risk you have for osteoporosis etc

they’re just happy to leave you to suffer I think what is an endocrinologist xx

Moon_maiden profile image
Moon_maiden in reply to Prettythings1

Sage is one natural alternative to HRT, others include, Red Clover, Black Cohosh, evening primrose oil are others. Magnesium is useful for us and things such as hormones, digestion. There are other herbs just can’t remember which ones.

If you don’t need a hysterectomy that’s good, not something I thought I’d ever have. They leave the ovaries sometimes because of bones and so much they don’t understand, with Endo I’ve read it’s not good to leave them, but is down to lack of Endo research in general how true it is.

I think the general consensus is to avoid surgery if they can, it’ll backfire as they have no alternative. I’m sure I’ve got adhesions still, If a surgeon said to me they couldn’t I’d find one that would. Not wanting to isn’t the same as not being able to, they want the easy, less time consuming jobs.

Endocrinologist deals with hormones and conditions that deal with the endocrine system, conditions such as diabetes. Endo is a disease without a proper category. Some think it’s an autoimmune disease as well. 🤦‍♀️ They don’t test hormones nearly enough.

Clairebear44 profile image
Clairebear44

I was on Zolidex initially for 6 to 9 months while waiting for a hysterectomy for Endo and Ovarian cysts. As a result of Covid I was left on them for over 3 years, initially being told it was ok but doing my own research I found it wasn't ok. As I already have spinal arthritis which has deteriorated recently I questioned whether they could assure me 100% that the injections hadn't exacerbated my condition, and they couldn't! So now I'm having a full body bone scan next week! I've had a hysterectomy 4 weeks ago and I was plastered in Endo with my fallopian tubes, ovaries and ureters stuck together with it. Everything was taken but I'm still at risk of it growing somewhere else as they couldn't guarantee all the Endo was taken. Leaving ovaries in would only create more Endo in the future. I wouldn't stay on the injections if you already have medical issue with skeletal and I would definitely have the full hysterectomy!

Prettythings1 profile image
Prettythings1 in reply to Clairebear44

Thank you so much for your reply. They seem to fob me off

I hope everything goes okay with your bone scan

I will push for a full hysterectomy. Thank you

doX

Prettythings1 profile image
Prettythings1 in reply to Clairebear44

i hope your body scan went okay

CFin profile image
CFin

Hi, I’ve been on Prostap injections for 6 months now and I’ve had EXACTLY the same experience as you, particularly with sore joints and muscles and very bad mood, these are known side effects listed in the product information. I have found that mefenamic acid helps for the pain, it’s prescription only though and shouldn’t be taken long term. I’m sorry but I have no suggestions of anything to help with the mood though, I’ve been desperate at times and only sleeping and cocooning myself has kept me from topping myself over the past months. I’ve decided not to continue any further with the Prostap (which you can do for longer than 6 months but off-license), I can’t bear it any longer. It’s also had only limited improvement for my lower abdominal pains, which the gynae says means it’s not a gynaecological issue causing it. I’m sceptical and deeply suspicious it’s endometriosis and that Prostap is not the magic bullet medical professionals think it is. Because of this she’s agreed to perform a laproscopy, which I don’t think she’d agree to unless she had her doubts too. I now need to decide whether to just wait (how long, who knows?) to get it done on the NHS or pay the quoted £5.5k and get into debt to get it done privately. I should add it’s taken me 6 years since my abdominal pain started to reach this point of getting someone to agree to lap.

Prettythings1 profile image
Prettythings1 in reply to CFin

so sorry you have been struggling to

The low moods are awful xx

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