Is this too many drugs?! Prostap, Tibilone, Norethisterone, Tranexamic Acid, Mirena Coil

[Mrsb1987]

I'm so worried. I had a mirena coil fit in March, to help stop heavy periods. I have bled every single day since.

The GP wouldn't remove it, as I hadn't given it enough time. Instead I ended up taking 9 Norethisterone a day (usually you take 3).

Then I ended up in hospital because I couldn't handle the bleeding anymore, they won't entertain a hysterectomy because I'm only 33, despite the fact I have ovarian and cervical cancer in the family.

Instead they gave me Prostap injections, 4 weekly, with Tibilone everyday. I'm now on my 2nd injection and the bleeding still hasn't stopped.

I have now been prescribed 6 tranexamic acid a day, 6 Norethisterone, and my usual Tibilone.

I still have the coil in, as the consultant said I havent given it long enough. I may have sworn at her at that point, as homeschooling 3 small children and bleeding everyday for over 4 months is horrendous, to then be told I've not given it long enough!

The Prostap and HRT increase risks of getting all the cancers that run in my family. There is also risk of clots, and the t/acid clots your blood so the risks are going up.

I'm so worried, this is so many drugs to be taking. I usually take nothing at all. I also take iron at the moment, basically to stop me collapsing in a heap.

Any advice, anyone???

I've seen 3 GPs, 1 nurse, and 1 consultant and I'm worried they're not reading from the same page.

[Mrsb1987]

I should add, my average heart rate has dropped from 74 to 52, and my BP is usually 80/60 but now its 138/102. I am having dizzy spells and generally feel like death!

Doctors not concerned about this as those readings are still normal, but they definitely aren't normal for me!

[Chrissie66]

You poor thing, you’re definitely going through it!

I had a Mirena in for just over ten years (not the same one, obviously!) and it took my body 6 months to get used to the first one. I too had Prostap but not the Tibilone and I suspect that that’s probably what’s causing your problems, at least from the bleeding point of view.

If I were you, particularly in view of your family history, I’d write to your consultant and outline clearly what you’ve told us here, but with more dates for when you started taking each drug, when the Mirena was put in, and also when all of the side effects started, and ask them the same question; are there too many drugs, and could they possibly be interacting with each other. I know exactly what you mean about the possibility of the left hand not knowing what the right is doing. If you actually write to them and ask for a response somebody will have to look at all of your records combined to give you answers.

Good luck, and I hope you feel better very soon x

[Moon_maiden]

Great idea from Chrissie. Maybe a second gynae opinion.

I don’t know enough about the coil, you know your body though. BP is an increase, point all this out in the letter as well. Even if it’s just the bleeding causing stress, it’s a valid reason for them to do something. Hope they do something to help you

[Janeyjane20]

Hi I really feel for you I’m a lot older than you but have been where you are I’m 55 and taking 6!northisterone a day 6 Transexamic acid a day 3 iron tablets high blood pressure tablets but I did have prostap but after my 3 rd injection I took it on myself to stop it I started bleeding the first day of my first injection it was horrid I had no side affects apart from the bleeding I am waiting for more scans ready to have an abdominal hysterectomy as I have large fibroids I’ve had them removed before but too large now to remove any other way I have no sign of menopause even though I’m 56 next week I just wish when I was your age I had had the right support and advise to maybe have had a hysterectomy as I have suffered for years and I just want a normal life back I wish you lots of luck to get sorted while you are still young especially if you have the family you want 👍👍

[Shelly085]

Hi I’ve had all them medications but not at the same time the mirena didn’t work for me either but I got it taken out an got talked in to getting a new one in, they said the first one might of just been put in wrong, but the next was even worst my body just rejects it, I’ve tried prostap an tibilone recently side affects where to bad for me to carry on.

If I was you I would get a second opinion you can search up a endometriosis specialist an if they do nhs, you can ask your GP to refer you it’s your rights. I found one last year in Manchester as I wasn’t happy with my original one where I Lived, mentioned him to my GP who was like saying to me it has to go through some meeting thing to see if they can pass it an stuff with being out of area, it’s not just up to them. Then I got told it got knocked back which I new was a load of bull so I decided to pay for a private consult with the Manchester specialist an it was the best money I ever spent, he was the first person who has actually sat down an listened to me and my concerns an he told me what he reckoned was going on which was all confirmed on a MRI I’m now awaiting surgery with him as he wrote to my GP an I was referred straight away.

You tell them what your wishes are it’s happening to you not them, it’s ok them saying this an that but there not the one going through it. I really do hope everything gets sorted for you x

[Hidden]

Well I'm 29 and having abdominal hysterectomy on Thursday!! Although my problems were quite similar to yours it's been going on 10 years I also have endo and have had numerous surgeries in the past iv had all the above drugs among others, can you not ask for a 2nd opinion? I got referred to private hosp although it was on the NHS, and the treatment was so much different. I was on the zoladex (same as prostap), tibilone, and provera as well as tranexemic acid and they were not happy with all that I was on due to risk of clotts. Its quite risky have you been anemic with the bleeding or is it just very bothersome and painful. I get you totally I had to go through this 10 years. Xxx

[Linley]

Agree with Moon_maiden and Chrissie, you can't go on like this and you know your own body. Take care and let us know how you get on x

[Anna_Franziska]

I’m so sorry to hear this and I can totally relate. I was given heaps of pills and bled for over a year and I was constantly worried about it. I ended up seeing 5 different gynaecologists before I was happy. My only advice would be keep pushing to see someone new until you’re happy with the advice. It’s really exhausting and provoked a lot of anxiety and depression for me so do try to take care of your stress as best you can too. It will get better even though it feels never ending. X

[Moonglo]

Tranexamic acid is supposed to help with inflammation/pain.

Mirena, Norethisterone, Prostap and Tibolone all influence your hormones, and the latter two can be used in conjunction.

I see massive red flags with all those hormones you’ve been given at once. It just seems like your hormones are being pulled in all directions.

I agree with Chrissie66’s suggestion about writing to your consultant. Also do your research about each of these treatments, and look for patterns (for example, do any of them ‘contradict’ each other?). Aside from your cancer concerns, it seems strange to have so many hormones at once. You should be able to find the leaflets online. Include anything you think is relevant in your letter.

[Lily1986]

Hey

I had similar issues with mirena. It was inserted during my last surgery and I bled everyday for at least 9 months.

The bleeding has stopped now with the exception of occasional spotting but it has done nothing for the pain.

I too have asked a few times for it to be taken out and not been allowed (I actually requested not to have it before my operation) which seems a little unfair seeing as it’s OUR bodies it’s inside!

I’ve also just had 3 months of the chemical menopause with hrt and what a horrible experience that was! Yes it helped with the pain but the side effects weren’t worth it and I was still taking strong pain relief daily to help with other elements of the pain.

It sounds like maybe they are keeping your coil in to act as the progesterone part of your hrt now rather than to actually help.

I know it’s awful that we have to resort to it but if there is anyway you can afford an initial private consultation with an endometriosis specialist (aprox £150) they will give you the time and care to explain and examine all options. Any treatment or adjustments they recommend they can then done on the Nhs.

I think it’s very easy for different medical professionals not to work together and not know the impact all these drugs are having on you and the risks involved.

Sorry for the long winded post. Wishing you the best of luck xxx