Prostap advice required

[Kirst625]

Hi ladies, hope everyone is as ok as they can be. I wonder if anyone can help? I'm due for my first prostap injection on the 23rd May and I've read, and heard from an Endo sufferer, that it can cause a flare up before it shuts your cycle down. What I forgot to ask her was how long after the injection does the flare up typically happen? Is it anytime after the injection or does it wait for your normalish cycle to kick in? I'm due to be a bridesmaid on 9th June and was so lucky to make the hen do this weekend. I came on last night and spent most of it awake. I haven't been able to go to work today for the pain, despite max dose co-codamol and naproxen. I'm trying to ensure I can be prepared to not let it spoil my friend's big day. Any info and advice gratefully received x

[Tillyfloss]

hi. Hope you aren't in to much pain, its a horrible disease ☹ . I have had a really positive experience with prostap, I had a light withdrawal bleed when my period was due, it was the first in years I didn't take to my bed! I did get hot flushes but the pain just went. I hope it works for you and enjoy your friends wedding 💒. Xx

[Kirst625 in reply to Tillyfloss]

Oh wow, that sounds amazing! I'd read about flare up a few times then the woman I spoke to last week said sometime after the first injection she was in complete agony but after that passed it got a lot better. I'm hoping for your experience! I get hot flushes and terrible night sweats now so was thinking I'd cope with that. I am wondering about asking for a stronger painkiller as back up, on max co-codamol and naproxen combi, it takes the edge off but doesn't alleviate it as much as I'd like. Any tips on next meds to try anyone? Thanks so much for the reply 😊 X

[Tillyfloss in reply to Kirst625]

it was a really positive for me, I was in hospital and feeling delicate after surgery and I couldn't be bothered to look it up and just trusted the surgeon and I'm so glad I did as once I googled it I was expecting the worst but it didn't happen 😊. The injection sight was sore the first time ( they did it in my arm) but after that it was thighs or tummy and didn't hurt.

for meds its very much an individual thing, co-odamal made me worse as I've had endometriosis on my bowel and it was aggravating it. The specialist put me on amtriptyline, paracetamol, tramadol, buscopan and orapine for emergencies. It kinda of depends where the pain is and if it's constant or worse around your cycle. I found a meeting with the local pain team and big help as they checked I was on the best meds for my symptoms and went over management of it as a continues thing as I was taking the meds to late and the pain took over. I was seen in hospital but I think you can ask to be referred by your gp.

xx

[Kirst625 in reply to Tillyfloss]

Thanks so much xx

[Maxi72]

Hi

I had a positive experience too. Was waiting for a flare up but it was like a miracle within 36 hours. For the first 4 weeks I had no HRT and the hot flushes and dry skin kicked in. Since taking HRT the benefits haven’t been so good but I’ve had no bleeding at all.

Fingers crossed for you. X

[Kirst625 in reply to Maxi72]

Thanks so much, please see comment below xx

[livvi_livvi]

Hi, I hope you start to feel a bit better. (Well as better as anyone with endo can feel). 😉

I too have really positive Prostap experiences. With the first injection I had a really sore arm and a small lump formed on the injection site (between 2-7 days after having it done). Both of these went off after a week.

I then had a small bleed about 3 weeks in, but this was not very painful. (Unfortunatelty I couldn't tell you if this was where my normal "cycle" was as I have never really been regular).

Other than that I do suffer night sweats and hot flushes and sometimes struggle to regulate my temperature hot or cold. Sometimes I find it can make me anxious at the start of an injection and it can give me palpitations but those all settle.

I have now been on prostap for 3 years and it has helped to give me my life back.

In terms of pain relief I would go to see your gp in the first instance and see if they can give you some advice. I know mine liked me to have co-codamol (prescription strength for flares and over the counter strength for daily pain) and naproxen. Although now after being diagnosed with chronic pelvic pain and seeing a the pain team I am on morphine, paracetamol, ibruprofen and gabapentin.

Hope that your injection goes well and that you have a good time at the wedding. 😁 xx

[Kirst625 in reply to livvi_livvi]

Thanks so much, please see comment below xx

[Sam1983]

Hi

I also had a good experience with prostrap, the injection was done in my stomach and it was a little tender like a small bruise when you touch it and a little itchy for a couple of days. I didn't have any menopausal symptoms whilst on it. I was only on it for 6 months and then they decided to operate. It did relieve the pain mostly.

I would ask for stronger pain relief just in case, I find that heat helps with my endo pain so it might be worth investing in some of those stick on heat pads.

Hope you get to enjoy the wedding day

[Kirst625 in reply to Sam1983]

Thanks so much, please see comment below xx

[Kirst625 in reply to Kirst625]

And yes, heat is marvellous usually but have found it more hard going for it to be part of pain management now the weather has hotted up too?! Xx

[Kirst625]

Thanks so much for all of your replies, positivity and well wishes. It sounds pretty hopeful on the whole! Can I ask, apart from Tillyfloss, did anyone else have the injections before having a diagnosis or any removal of endometriosis? I have neither so far, this is to determine next steps xx

[livvi_livvi in reply to Kirst625]

I had it after diagnosis and after my 2nd lap to remove endo.

For myself my consultant was reluctant to start the prostap as I was only 25 when I started them.

Can I ask is it a gynae that has recommended the prostap? Xxx

[Kirst625 in reply to livvi_livvi]

Thanks again for replying, v helpful. Yes, 2nd gynae to recommend it, better than the first who mentioned the possibility on the letter back to my GP after saying he thought it was 'just IBS' and had given me more medication to try for that (even though previous GP had tried most of the same medication to no good effect) 2nd was much more willing to take the idea of Endo on board but expressed caution about heading straight for lap incase of causing further difficulties. Wants me to try prostap first as a determined as to what to do next, likely lap xx

[livvi_livvi in reply to Kirst625]

Yeahh that makes sense.

Gosh I do sometimes wonder how these gynae's qualified. My first gynae after removing endo in a lap told me at 21 (when I was in the middle of university having a rather bad episode of depression) that I was to get pregnant and that would 'cure' the endo but since I wasnt in a position to do so the endo may return and then discharged me.

I am lucky though in that my current gynae consultant is amazing and takes his time to explain things and takes into consideration my whole situation.

To be honest though I was nervous about starting the prostap especially at my age however I now cant imagine life without it! Haha.

I do hope that it works out for you! Xx

[Kirst625]

What was your first gynae like?! It does make you wonder. Pleased to hear about your current gynae though, I was also relieved as the second one I saw sounds similar to yours and I've asked that I get follow up with him. Sounds like prostap is really working for you and fingers crossed it does this end too. Thanks for taking the time to reply! Xx