First day of treatment for Endometriosis and PMDD (Synarel HRT)

[BilboBags]

Hi guys,

Today is my first day of treatment for PMDD and Endometriosis. I’ve been prescribed with Synarel nasal spray and an oestrogen HRT which is supposed to simulate a hysterectomy, if I react well the doctor will go ahead and give me one.

I know you shouldn’t, but of course I’ve been online reading other people’s reviews of the drugs because I’ve had such bad reactions to meds in the past. Some are good, some bad so it’s difficult to gage. Has anybody on here been down this route? I’d really appreciate some insight.

Today is day one and I’ve been finding it very hard to focus and feel a tad out of it but so far it’s not as bad as I expected. I’m usually instantly demonic after taking anything that affects hormones. But then again, I’ve had a day off from work so don’t know if I would have coped so well if I was in work today.

Do side effects typically worsen as the weeks go on, or do you begin to feel better?

[Kangaroodle]

Hi,

I just found your post and wondered how you got on? I’ve just be prescribed Syneral and HRT for endometriosis and adenomyosis while I wait for a hysterectomy.

I would love to know how you got on.

Thanks

Rivka x

[BilboBags in reply to Kangaroodle]

Hi there,

Sorry for the late reply, I’ve only just seen it. My experience was horrific if I’m honest. I had to give up in the end and am currently just grinning and baring it. I felt dreadful on the meds and couldn’t function at all. Don’t let this put you off however as my doctor thinks I’m intolerant to synthetic medications such as SSRIs and anything hormone related. My reaction to them isn’t the norm. I hope everything is going well for you. My mum went through all of this and she has been just fine so I know it is the answer for some women.

[Kangaroodle in reply to BilboBags]

Hi,

Thanks very much for the reply. I have decided to not take the medication after all. It sound like we are similar - I have been told in the past that I am extremely reactive to synthetic hormones and SSRI’s which is why I was so fearful of taking it. I think it might be due to me having the MTFHR mutation, do you have that?

I think I have decided to pay for a private hysterectomy - really bloody expensive but worth it I hope. I can’t bear this pain anymore but really don’t want to take the medication.

Good luck with it all, I hope you get some kind of resolution to it too.

[BilboBags in reply to Kangaroodle]

I’ve not heard of the mutation before but it sounds interesting and might explain a lot. I got seratonin syndrome after only 3 days of taking the lowest dose of Prozac you can get and ended up in hospital. It’s the same with any hormones. They will want you to take estrogen after the hysterectomy though won’t they? It can be dangerous not having any in your system at all.

[Kangaroodle in reply to BilboBags]

Oh wow that sounds very scary. I had a huge reaction to 5htp - not as big as yours but it was crazy! And synthetic hormones have always made me feel mental. I have been in touch with a clinic in London who prescribe bio identical hormones and I am hoping to use them after the surgery if required. I know that some people do manage a hysterectomy without HRT though - my mother in law did it. I have a nutritional therapist at the moment who thinks she will be able to help me with all the other side effects of not having oestrogen - bone density and homocysteine levels etc. She has helped me with diet and supplements which have helped with some of the symptoms I have - particularly mental health rather than the pain of endo and adeno.

[BilboBags in reply to Kangaroodle]

Oh wow, that sounds awesome. You’ve got it covered from all angles and have really done your research. I didn’t even know bio-identical hormones were available to buy. I have OCD as well which can fluctuate during times of low estrogen, I’ve been dreading menopause due to this but you’ve just given me hope! What a hand we’ve been dealt huh. GPs and private doctors I’ve seen have been useless, I’ve had to learn to just crack on with it.

[Kangaroodle in reply to BilboBags]

I think you should really look into this MTHFR mutation as I am sure I have read that OCD is common in people with the mutation. And there is lots to help if you have it - mostly methylated b vitamins - but this can depend on other factors. But definitely worth you looking more into it.

I have done a tonne of research, happy to chat more about any of it x

[BilboBags in reply to Kangaroodle]

Lovely, I’m sure I’ll be picking your brains in future. Let me know how you get on and I’ll let you know if I have any break throughs

[BilboBags in reply to Kangaroodle]

I’ve just realised I have a prescription that’s been sat in a drawer for months for a bio identical estrogen! The doctor gave it to me as a last resort to try with the synarel but I’d given up by that point. It’s a gel you rub on your leg. Thanks so much for the info, at least now I know a hysterectomy could be an option in the future xx

[Kangaroodle in reply to BilboBags]

Wow that’s great! Are you in the UK? I think it’s pretty rare to get prescribed bio identical hormones in this country so hold onto it and the doctor that gave it to you! X

[BilboBags in reply to Kangaroodle]

Again, I’m sorry for the late reply. I have this forum linked to an email I rarely use, I need to change it. Yes I am in the UK, where are you?

I read an interesting academic paper recently about a calcium defect which is apparent in women with PMDD. I ended up going down the research rabbit hole (I’m sure you know what that’s like), due to having a few good months of respite from the PMDD and then it returning with full force. I thought back and realised that it always seems to be worse during the summer (we’ve had a real hot spell lately which could explain it). I then started to look into vitamin D and PMDD and stumbled across the Calcium/Vit D academic papers. When they tested both normal and PMDD women throughout their cycles, it was quite clear that the PMDD women were not metabolising these vitamins/minerals in a sufficient way.

Here is a link to a good case study:

academic.oup.com/jcem/artic...

It may be of interest to you. Perhaps calcium supplements may help us take the edge off. I feel as though I try everything but don’t quite give anything long enough to actually have an affect. If I start to feel rough or don’t get immediate results, I give up. I hope you’re doing well, if I see any benefit from the calcium I’ll let you know. X