Advice from long term Prostap users please

[Rayray1984]

Looking for advice from anyone who has been given Prostap for longer than 6 months…. I have been prescribed it monthly after completing the initial 6 month course, trying to avoid surgery at the moment. My consultant has added in Estrogen patch and Mirena coil and my side effects are terrible. Has anyone been in this situation, does it get any better?

[claudia_91 Moderator Endometriosis UK]

Hi Rayray1984

Thanks for your post. It sounds like you're dealing with a lot here what with managing the side effects on top of your endo symptoms. I haven't been on this combination of treatment myself, but hopefully others have and can comment. Often it does take a little time for things to settle down. Doesn't make it any easier when we're living with the awful symptoms, but hopefully things will get better for you 💛

Take care,

Claudia

[Rayray1984 in reply to claudia_91]

Hi there, your reply has meant the world to me. I’ve had such a rubbish day with all this and seeing your lovely comment has really made me smile. It’s my first time posting on anything like this, always a bit nervous to. I have been at my whits end, it’s not just affecting me physically but emotionally too. So thank you for reaching out. I see my consultant 30th June so hopefully I can get some more reassurance then xx

[claudia_91 Moderator Endometriosis UK in reply to Rayray1984]

Hi Rayray1984

I totally understand how you feel, we all have days (or months, or years...) like this. We're all in it together. It really does have an emotional effect too. Hope you can do something nice for yourself this evening, watch your favourite show or have a relaxing bath maybe?

Also, Endometriosis UK has a helpline if you ever fancy chatting to someone who also has endo. The rota is here: endometriosis-uk.org/helpline

Hopefully your consultant can advise, sometimes it feels like the appointment is really far away but it will come around quickly. Take care and feel free to message again whenever 😊 xxx

[Luz_R]

Hi Rayray1984. We usually try Tibolone as HRT addback with an antignrh. If the side effects are too much there is another drug you can try called Dienogest.

[Rayray1984 in reply to Luz_R]

Hi thanks for your reply to my post. I am going to speak to my consultant about Tibolone, I have been doing some research yesterday around that drug as I had never come across it before. Is Tibolone more expensive that’s why I haven’t been offered it? Or is it more to do with the consultants preference? I was told I needed progesterone and estrogen due to my age. I should also add my mother has had breast cancer and I am worried about wearing the estrodot patch, I was told the benefits outweighed the risks at my age, but it’s still a worry. It’s good to know I have options. You don’t always find out about other drugs and treatments until you come onto forums like this. Thank you so much x

[Mustang2598]

Hi, I was initially on prostap for 6 months and was great. I had a Mirena at the same time. I was much better on it than off it. After about a year they put me on it again but this time with Tibolone. I’m going to be on it supposedly until surgery. The waiting list was 12-18 months though from Christmas, so may have to do a bone scan if the surgery is delayed as it can effect bone density if on it too long. Hope that helps.

[Rayray1984 in reply to Mustang2598]

Hi thank you so much for reaching out. I am going to be on it a while too. As I’m better on it rather than off it I am happy with that. It’s just since I had the Mirena inserted 5 weeks ago I haven’t stopped bleeding. The first 5 months on prostap my periods stopped and it was bliss. It actually changed my life, I could join the gym and do things I haven’t in years. Due to extending prostap beyond the recommended 6 months I was advised I would need HRT, combining of Mirena coil and estrogen. I don’t know what’s making me bleed, it was very traumatic having the coil fitted. I was suppose to have some local anaesthetic or entinox as my uterus is very stenosed from being on prostap, anyway I had it without any of those things and I swear I have PTSD it was hell on Earth lol. Trust me I know pain, I’ve had two children and suffered with my periods for years and I’ve had two coils put in no problems in the past. As I had the coil fitted and started estrogen in the same week I don’t even know what’s causing this 5 weeks of bleeding. Some days it’s heavy and clotty other days it’s light and I only need a liner but it’s everyday. I’m so fed up I feel horrible in myself, I have no intimacy with my partner because of this. I mean that’s the least of my worries and he fully understands. I’ve been told lots of things from other people “leave it 12 weeks for it all to kick in” “you can bleed 6 months with the mirena” “you might not stop bleeding” I just want to know if this is normal and if it isn’t are there other things for me to try. Sorry for my life story 🤦🏽‍♀️ X

[Mustang2598 in reply to Rayray1984]

Hi,I had to have the Mirena put in under GA. Had a smear at the same time. Too painful otherwise. Poor gynae tried but wasn’t worth the pain so didn’t push it and I appreciated that. Personally I don’t think the coil does much for me. I started prostap same day for the initial 6 months. Think it was more prostap than the coil, but will never know. I bled for a while after, but pretty mild. Just very random

And not all the time. I no longer have periods luckily. Personally I’d give it a bit longer. Like I said, I did bleed initially. Can’t remember how long for. Was a while though. I know it’s a bit different when it’s very minor like with me. Can take a while for your body to get used to all the different hormones though.

Hope it all settle soon.

[EndoViking]

Yes, I had the coil, injections and add back HRT. The HRT helped with the awful Prostap side effects but I also had side effects from the coil. I wanted a hysterectomy and finally got it after much pushing with my consultant. I had injections for 9 months

[Rayray1984]

Thank you for your response. How long ago did you have your hysterectomy? Have you been ok since having it done? X

[Goofy22]

Hi,Sorry to hear about your pain.

I had the coil fitted and was in constant pain from the moment it was fitted, I did bleed for about a week.

It was so painful that after 3 weeks I asked for it to be removed.

I’m now on Prostap and they have got rid of all of my pains, no periods or mood swings.

Hope you find the solution that works for you.

[Rayray1984 in reply to Goofy22]

Hi, so are you not on any HRT at all? My consultant said due to my age and bone density I have to have combined estrogen and progesterone x

[Goofy22 in reply to Rayray1984]

No - I tried the patches when I was on the coil and they made me feel really queasy - almost like a hangover without the drinking!When I was given the Prostap I was told to use HRT if I had any symptoms. At the moment, the only thing I’m getting is night sweats which I’m choosing to tolerate.

I’m having a full hysterectomy on 27th June so will try HRT again after that but think I will have to persevere to find something that suits me.

[Rayray1984 in reply to Goofy22]

Ah ok I see. Good luck for your surgery. I hope you have a speedy recovery. It’s so hard being a woman at times. I am surrounded by men and they just don’t get it 🫤 I want to come back as a man x

[Goofy22 in reply to Rayray1984]

Thanks- the injection has showed me that the operation is going to work as I’m no longer in any pain.Hope you find what works for you.

Agree, sometimes it’s very hard being a woman! x

[635703]

Hi 👋🏻

I have another type on Gnhr analogue called Zolodex with HRT Tibilone.

Mirena coil’s I have had from 2007-2021 and so I can share my experiences of this. What are your side effects?

Happy to help, if I can x

[Rayray1984 in reply to 635703]

I was brilliant on Prostap on its own, it wasn’t until I had the mirena coil inserted and started on estrodot 5 weeks ago that I am bleeding every day. Will it eventually stop? Some days are heavier than others I think when my prostap is losing efficacy and I’m due my my next injection my bleeding does become heavier. I just want a reprieve from the bleeding. As you can imagine it’s not very nice x

[635703 in reply to Rayray1984]

Oh absolutely, bleeding is exhausting and can be life limiting - horrid!

Well, every person’s body is different and so I can’t promise you that it will settle 💯 but I would simply encourage you to wait a good 3 months or so and review again. I am not sure what the medics would say. But via others I think they say give it 6 months. I may be mistaken.

It’s your body and ultimately your call, and so, please, you decide.

Has your pain management improved?

How is the fatigue?

(List any other side effects and score them before and after).

If you score it out of 10 with zero being very awful and 10 being amazing.

Basically this will help you do a pros and cons list. Which can help you make a solid decision.

Finally, please check out Jessica Duffin of this Endo Life, for natural solutions. Best on Instagram but has a website.

Henrietta Norton’s book How to control your Endometriosis are both good starting places, if you haven’t google them up and search for your heavy bleeding.

Happy if you message me too x

[Rayray1984 in reply to 635703]

Thank you so much for this information. I will head over to Instagram to have a look.

My pain score would have been 10/10 6 months ago, I was a 0 before I had the hormone therapy added in, now I’m 4/5 most days.

I have a gynae appointment June 30th so I will get to speak to my consultant or at least her registra to ask some questions. Putting this post up has lead me into a new world of other medications that are used to treat endo so I am so grateful for all your responses x