Post surgery help - Anti-adhesion film / gel and Desogestrel?

[JadeH92]

So frustrated I don't know what to do, any advice please? I am going to be cheeky and write this in both the fertility forum and endometriosis forum as I don't know which one will be best (so if you are like me and are in both sorry for spamming your feed).

I had surgery on the 17th March for endometriosis after having a miscarriage in August 2019 following my first transfer. Prior to this my fertility consultant put me on Microgynon, to ensure I had monthly bleeds in order for me to be in a routine for starting my next transfer (because I don't have regular periods). For pain etc my endometriosis consultant advised me to change from Microgynon to Desogestrel. I changed this 3 and a half months ago. Since I have been on it it have had nothing but problems; heavy bleeding every 28 days which last 2 weeks+ then continuous spotting after that, zero sex drive like I have never experienced before, weight gain and it has not helped with my pelvic pain AT ALL in fact because of the constant bleeding which increases my pain I think it could be worse.

I have been trying to safely loose weight prior to arranging my next transfer. I am getting to my goal weight now, my clinic is back open and I feel is a stronger place mentally so I feel I would like to start planning my next transfer.

I was supposed to have my operation follow up appointment via telephone due to Covid19 on the 13th May 2020 (date I was given after my surgery). I am an NHS patient in a Private hospital (I did pay for one consultation with my endometriosis consultant because I couldn't cope with the pain I was experiencing and couldn't wait the NHS waiting times) anyway, the 13th comes and I receive no phone call despite me phoning up earlier that week and also the week before to ensure it would still be going ahead. I spoke with the secretary and to cut a long several days long cat and mouse chase story.... My appointment was left on the system by mistake and should have been removed due to be being an NHS patient therefore, my consultant was refusing to talk to me and discuss my surgery. After me expressing that this was not acceptable his secretary did say if I text her some of my questions she will ask him to answer them. She also sent me my operation note which was very vague.

During my surgery anti-adhesion film and gel were used inside my uterus (after removal of a uterine septum), around my ovaries and inside my pelvic cavity. Therefore, I have several questions that I need answering such as how soon after it being used can I have a transfer? Was anything else found that could impact my fertility? Was there any endometriosis found? Why am I having regular bleeds on this pill and can I just stop it?

I have since text her twice asking for these answers as I am waiting to restart my fertility journey. I feel the treatment I have been given is disgusting but I was wondering if anyone knew the answers regarding - if I can just stop the pill? and how long I have to wait before I have my second transfer from having the surgery and the anti-adhesion film / gel being used?

Sorry for the long post and thank you soo much in advance!

Take care.

[Moon_maiden]

Shocking follow up, ask the secretary for a copy of all the notes, it’s free and they can’t refuse. At least this will provide some answers.

You could book a private follow up.

Desogestrol helped emotions, I was only on it a couple of months, did nothing for pain.

Maybe tell the secretary you’ll contact PALS if you don’t hear anything, might speed it up.

Speak to GP about the pill, they could always ask the consultant. They can send a message through the system.

Hope you get some answers soon.

[JadeH92 in reply to Moon_maiden]

Thank you for your reply.

Seeing him privately would cost me another £250 for one consultation which I cannot afford and if I'm completely honestly I feel like why should I when he has a duty of care towards me! I am aware things have changed due to Covid19 however, it is appalling that if I got my bank card out he would see me but because the care is funding my the NHS instead of myself I don't matter.

I am going to message his secretary today however, I have already decided I'm not going to take the Desogestrel anymore from today. I cannot carry on with the side effects from it.

Thanks again for your reply, dependant from the response I get today I will probably take it further.

Take care x

[Moon_maiden in reply to JadeH92]

I agree, we shouldn’t have to in the first place, let alone after. Way too many misdiagnosis. That’s an incredible price for a follow, crazy to charge the same amount.

Hopefully the secretary can help this time, let us know how it goes.

I’ve stopped tablets in the past. When I stopped that one, it didn’t make much difference.

[JadeH92 in reply to Moon_maiden]

Just a quick update, after taking advice from the fertility forum aswell where someone kindly gave me advice regarding going to the CCG. I put that in the message to the secretary and to my surprise I recieved a telephone call from the secretary to say he has answered my questions in the form of a letter and she read it to me.

I can stop the pill if the bleeding is causing me problems and the anti-adhesion film dissolves within a week following surgery. Therefore, I will be okay to go ahead with my transfer whenever and also he has said the removal of my uterine septum could increase my chances of carrying a full term pregnancy and reduce my chances of further miscarriage.

Thanks again for your advice and your support! Xx

[Moon_maiden in reply to JadeH92]

That is great news 😀👍

Hopefully things will improve.

I forgot about CCG, although to be honest the CQC are better bogeymen 🤣. Had success last year with them on one occasion for someone else, but forgot about them as well.

I had a bit of news, discovered a letter from consultant to GP on my records which is promising as he mentioned bringing forward MRI. It’s a pity GP hadn’t let me know, but sick of micro management.