*rant* Treatment Options before surgery?

[L4ndoluver]

Hi there, i have recently been admitted into my local hospital due to a major pain flare. After speaking with the on call Gynecology doctor, he wanted me to go onto norethisterone indefinitely and he did not want to discuss any other options. so far i have refused to take that medication. the only reason it has come up that i have been diagnosed is due to it showing up on a recent MRI. another thing that he had said was that he was going to order another scan to see if anything had changed, he didnt tell me what type of scan he wanted to do but logically an mri or ct wold be the way to go, right? well he has ordered an ultrasound which i am still waiting for.

i have my reservations on taking any type of hormone, i have had a lot of mental health difficulties and i have had experiences where the hormones have caused me more problems than needed. some of the reservations about taking the norethisterone is that it can cause fluid retention, i have had numerous times where i have already gone into retention resulting in catheterisation and having to learn self catheterisation. another side effect that they have which i do not agree with is weight gain. My gyne consultant is all about me loosing weight as i also suffer with PCOS, but they are wanting to put me on a medication that has a high chance it will actually increase weight. It makes no sense to me. Myself and my partner have also been trying to get pregnant, and from what they were saying was that they want me on the hormone indefinetly and that i would be forefiting the chance of ever havign children of my own,

truthfully i am lost as i am seeing the pain team this morning. they are already looking after me and i am on buponephorine patches, oramorph, and pregabalin for the pain on a daily basis. so the fact that i was in a very big flare and the medications were not helping meant this was serious. unfortunately, none of my medications have been changed or anythign added and i have been left at the same level of pain that i came in with.

sorry for the rant anyway. bit if anyone has any advice of what i can do going forward and any advice of what treatment i can do instead of the hormone therapy it really would be appreciated.

Thanks

[Jen_dog]

to be honest if you are waiting for a surgery, or wanting to TTC, then having something like norethisterone as a first line option for a short while to give you and your body a break, is probably a good idea.

Longer term you would probably need a surgery to clear the endo, and then possibly prostap/zolodex for 6 months post-surgery.

I think you need to look at this as a short term option, while you wait for surgery.

If you want to TTC then sorting your Endo and PCOS would help. However, if you are ovulating regularly, and have a good leutal phase, maybe it’s worth TTC for a bit and seek a pain clinic referral to help you cope in the meantime. Although a short burst of norethisterone would maybe help with this. If you have been TTC a while you could seek a fertility referral.

[L4ndoluver in reply to Jen_dog]

The issue i have is i have just gotten through a long term recovery due to my mental health. when i was previously on norethisterone it had caused additional issues with the mental health setting me back further. I do not feel comfortable taking it when it has caused issues in the past. I also know if i take it and it affects my mental health then my physical health will decline further as i would not want to get anything sorted.

[DarkStar85]

Sorry you're going through this. Look into Utrogestan which is a body identical progesterone. Not a contraceptive. Less side effects and no evidence of weight gain. I've been on 200mg for 2 months just before my lap to try to stop my period. I don't have the mental health issues I had with synthetic progestins. It is off label as technically an hrt treatment, but I have an endo specialist consultant who had no problem prescribing it. I may need to up the dose to 300mg as I'm having a bit of bleeding and period symptoms. Other than that I have tolerated it well. Also look into supplements, NAC has some studies indicating it helps slow endo growth, DIM and calcium d glucarate help the liver detox estrogen. Omega 3 and magnesium are a must for me. Good luck.

[Washington1]

Hi. So sorry to hear that you are having to cope with so much. I'm not sure I can be much help other than to say I also did not get on with taking hormones. They do terrible things to my mental health. I have found a tens machine to give some relief, as long as I put it on when the pain starts. Like medicines they're not much good if you use them when the pain has ramped up. I wish I'd invested in a tens machine earlier tbh. Have you tried a pcos diet or going gluten free? Lots of women get relief going gluten free, although it can take up to 12 months to get the full benefit. Maybe worth looking up. I really do hope the pain team have been of help to you and that you get some relief soon 🙏