u/Individual_Muffin893

I have a love/hate relationship with hormonal therapy for Endometriosis and I am trying to see an endocrinologist. I want to know if anyone else has a similar experience or advice 🤞🏻

For context: I have Multiple Sclerosis as well as Endometriosis and for me going on any hormonal treatment puts me into a pseudo relapse state (where previously manageable MS symptoms become very debilitating). I have recently stopped taking Dienogest, been on it since October ‘25 and I am starting to feel a little better. It worked well for endo pain and stopped my periods but since then my mobility has become terrible. The same thing happened many years ago when I took Rigevidon (I’m aware it’s a different type of pill from Dienogest).

I spoke to my GP last week and asked if she could refer me to an endocrinologist because my body has real issues managing hormones and functionality and I would like to see if there’s any way to understand what is going on. My doctor said that endocrinologists on the NHS (I’m in Scotland) don’t deal with gyno issues and there is no testing that can help me.

I believe seeing an endocrinologist is the right fit for the issues I am having, am I wrong to ask for this referral? Has anyone had a referral to endocrinology that has helped them in their understanding and treatment for endo?

I am 34, diagnosed with RRMS when I was 21 and I also have a diagnosis of Endometriosis.

I have been on and off hormonal medication since my late teens. Since diagnosed with MS I have found that being on any form of hormones puts me into a pseudo relapse state.

In 2017 I found myself practically bed bound with exhaustion, pain and mobility issues. I came off the hormonal contraception I was on at the time and my symptoms started to lift between 48-72 hours after.

Since then I have been very hesitant to use hormonal medication however, I reluctantly went on Dienogest in October 20205 for endometriosis as a last resort. Since then my mobility has fallen off a cliff, I use a stick every day, foot drop is 24/7 and walking is extremely hard. I am chronically exhausted too.

I stopped taking it yesterday and I am currently waiting to see if any of my symptoms lift. Fingers crossed.

I have been told in the past by my care team that there is no evidence for hormones impacting MS and I do not believe it, they impact my MS experience greatly. I was also told today by my GP that there’s nothing she can offer to help me get to the bottom of this after I asked for an endocrinologist referral.

I would like to hear if anyone knows of research or has personal experience that can give some backing to my own experience.