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[Gilla999]

I realise unlikely, but thought it couldn't hurt to put a shout out. Would love to hear from you if there is anyone! xx

[RebJT]

Hi

My sis in law had this for ablation, and my friend in Greece is on it for breast cancer.  A male friend took it for prostate cancer.  Not to scare you, it's also the drug they use to chemically castrate sex offenders.  All people I know say it's absolutely brutal, very very very serious drug indeed.  My friend in Greece is exhausted, and both she and my sis in law said they were getting 14 or so unbelievable hot sweats a day and really serious fatigue, mood swings, crying jags.

We chatted a bit on the pill thread Gilla, but I've lost track of where you are up to.  I hope it's OK to say that I always felt you were in the histamine boat like me, whilst I still struggle, life is vastly improved since getting on top of hectic mast cells, and my own opinion (for what it is worth!!) would be to exhaust that avenue before rolling out such big guns as GnRHa.

Reb
x

[Gilla999]

Ahh lovely to hear from you Reb! And hope things are a little better for you now since my crazy ranting pre HRT days!

Yes, I'm aware of how serious a med it is. I guess I was hoping that because I'm on HRT already that the side effects might be lessened as I don't think I have much of my own E left now anyway. But I realise that's a gigantic risk to take.

Since the summer I've reached the stage where I'm having very obvious anovulatory cycles (I test every month too so know) and it's really sending everything haywire again. My HRT / E feels way too high on the months I don't ovulate (massive histamine problems but also literally no sleep at all for 3 weeks in a row) but then if i reduce my HRT I get a return of all my low E symptoms when I then have an ovulatory cycle the following month. It's like I'm in a check mate situation and I suppose I wondered whether having none of the crazy fluctuations would make things better. But I totally agree on how serious a med it is.

Can I ask how you got on top of the mast cell situation? Xx

[RebJT]

Hey

I understand, but I think (you'd need to check) Lupron or whatever drug it is blocks the cell receptors, you are literally chemically castrated so my understanding is even with HRT in, it'd make no difference as your cells couldn't use the hormones.

In haste, can chat more another day, I see Dr Peers, I take regular antihistamines, an H2 antihistamine, montelukast (asthma drug, but also used as a mast cell stabiliser) and a tiny bit of Zaditen (ditto) plus a raft of supplements, I eat a low hist diet (swiss list, not as strict as I once was but to begin with very strict) and I look after my gut and all my pathways so oestrogen clearance, MTHFR, stay on top of iron (role in histamine), reduce stress etc.  But for a time I had to come off HRT, get the histamine under control and then add it back in.  Then it took a while to tolerate much at all, it's been a right faff as you know, but I'm miles away from the horrors I was in.

I think I'm having similar issues re anovulation and E, and currently trialling a longer prog cycle but debating whether to take utro like the pill, 25 days on and 3 off.  I do OK on utro now and it's massively mast cell calming.  I've also benefitted from medicinal herbs (not for everyone, did some deep dive research) to help with the bleeding but had to carefully cross check for histamine.

If you can get in with Dr Peers, I'd recommend her, she also has fact sheets on her website as does Louise Newsom.

Reb
xx

[Gilla999]

I was actually thinking about seeing Dr Peers - so expensive though!

I already take most of what you mention below - Antihistamines, Famotidine, Montelukast, also DAO. Tried the low histamine diet and it made no difference. I was thinking about Ketotifen but nervous of the next day sedation as that will be counter productive!

I totally agree on the Utro... I normally do well on that now and think I struggle in anovulatory cycles because there is no natural Prog and a lot of unopposed E. However if I personally try to take Utro at a time when it doesn't naturally want to be there it gives me insomnia - have tried several times!

My feeling is that I need to reduce my HRT, especially as I'm getting more anovulatory cycles, but it's something I have to do painfully slowly or I get unbearable symptoms. How much HRT are you now on Reb? There is no reason why you can't take Utro continuously if it works for you - my NHS Meno specialist confirmed that. My understanding is that breakthrough bleeding is the main issue with it, if you're not yet post meno.

Xx

[RebJT]

Hiya

Yes she is a bit pricey but been a god send!  But sounds like you are doing all the right things.  Toxaprevent helps I take it at night, it removes histamine from the gut (cheaper version is enterosgel on Amazon, does the same thing).

I think you and I have the same issue!  And I'm having breakthrough bleeding now (was trying to do a 21 day utro sequence) but a 'period' has turned up on day 17.  I had covid in May so don't think that helped meno symptoms or the histamine, my cycles have been irregular since.  I could cope with breakthrough bleeding, but it's heavy iron loss I have to avoid.

I was - post covid - up to 4 pumps and utro days 12 - 26 (I was doing well either 200mg oral or 100mg vaginal) as I started getting low E symptoms, particularly vaginal soreness.  However, I think that's too much (for the same reason as you) so I'm back to three pumps and trying to steady the ship.  I also take a bit of T gel.  I'm speaking to Dr P next month, she's a bit of a covid whizz as well so hoping she can guide me a bit better.  But my current thinking is maybe 25 days utro, and three days off for a short bleed like the pill, if my body will play ball.

Zaditen (Ketotifen) I had that issue, but I take half a ml (tiny drop) of syrup and that seems to help - in the worst of the pill crash, it was the only thing that kept me off the ceiling, truly hideous days, I had months off work and decided to suck up the stupefying fatigue (it really is bad, very foggy and tired)!

Biggest thing that's helped is somatic body work, really it's nervous system dysregulation (for me) that drives the worst of it, most ladies I know with severe histamine have some trauma in their history, either from abuse, childhood or even a serious car crash or traumatic birth or medical procedure.  Somatic Experiencing is super pricey, but there are budget options like a video e course of somatic movement exercises or even yoga for trauma (free on youtube).  That's been a game changer for me, I've always been a worry wart, and that sort of ruminating, high stress brain I have is a form of fight or flight, learning to come to rest has really helped (meditation for me made it worse, some of us can't sit with internal sensation without it triggering things, I've needed a very skilled guide to help me dip in and out and gently release stuff, much harm is done by practitioners who push for catharthis, probably the worst thing to do with a traumatised person, as is CBT - if I could control my thoughts i would do, I'm not stupid! Lol).

Hope that's not too left field, but at this stage of the game, I'm open to everything and anything!

Reb
x

[Gilla999]

Reb I can SO relate to the CBT... I've tried it twice in the past and thought it was a load of rubbish... I can tell myself I'm thinking differently but that doesn't mean that I believe it 

Nothing is too left field - I feel it's important to be open to things! I'll have a look into it.

Covid also had a gigantic impact on me and seemed to trigger all of these subsequent histamine issues (which seem related to my hormones... but they started as a result of Covid?!).

Anyway I really hope the longer cycle Utro works out for you - keep me posted! I'm going to get in touch with Dr Peers 

[RebJT]

Yes Dr Peer's view is long covid is mast cell over activation, all the mast cell groups I'm in are now packed with long haulers.  I think Louise Newsom now has a factsheet about this as well as covid attacks the ovaries (as does the V).  Although, you probably had it there already and covid just revved it up (certainly true for me for a patch, fortunately i was on all the drugs by the time it hit).

And yes NHS likes CBT as you can paint by numbers out of a manual and it's quantifiable, alas the human body mind interaction is a bit more complicated!

Good luck with Dr Peers (she has more than one clinic, might be worth shopping around to find the earliest slot) and thanks, I'm still debating what to do, reset to day 1 one this bleed, or grit my teeth until the end of the sequence!

x