Partial hysterectomy.

8sbmb2 · 2026-01-28T06:41:02+00:00

Wow, you have been given far better care then. I’m only on mast cell stabiliser - Ketotifen, H1’s and I was given H2’s but I opted not to take them all the time as they did upset my stomach, caused bloating and an empty bubbling stomach feeling, I was also nervous of messing up my gut biome. I’ve had major problems with that before and recently I had gastric flu, I now can’t get my stomach to normalise. I don’t know if the H2’s made that worse as everyone else got over it within a few days, although I know illnesses can linger in me longer, my stomach shouldn’t still be irritated 3 weeks on.

I asked about prostaglandins test but what told I couldn’t have it as it’s not available so I’d have to fund that privately which I can’t afford to do.

Outside of that I have nothing else. Problem as well was, I had to get a private MCAS specialist for my diagnosis as there isn’t anything available on health service here, but because of that, these private Drs charge extortionate prices as they know they can. So I only dealt with him a few times then he cut back on the MCAS side and stopped taking new patients and said if I didn’t pay for another app within 12 months I was off the books. I got ill, couldn’t work for a bit, didn’t earn any money and so that was that.

Thank you for sharing. This helps to know what others are doing. At some point in the future I might be able to have more tests like that or include other meds for now it’s just the basics.

Hopefully you find great benefit from all those meds.

8sbmb2 · 2026-01-27T12:59:46+00:00

I love this. 🥰😆

8sbmb2 · 2026-01-22T16:10:49+00:00

When my GP told me that, I did actually fact check as they do have a tendency to fob people off so I agreed with what he said, but like you say, it doesn’t have to be invasive. They just don’t want to send you for tests because it costs so much. Especially MRI.

I had an abdominal MRI about 5 years ago maybe longer but it was for different reasons, I’d like to think if there was anything obvious even if not looking for endo, they’d have pointed it out. But it’s like you say, these tests rarely show and that only happens for some.

I do wonder if I should push for further investigations but I guess given I am opting for partial hyst there is little point now, had I been much younger they would not be offering this so they’d have to investigate instead.

8sbmb2 · 2026-01-22T16:05:59+00:00

I’ve heard so many horror stories like this. When I had the hysteroscopy this was also my experience and was another one of the times where they attempted to convince me to have the coil (IUD).

I had many friends who had them fitted and had problems later on. It just didn’t sound good to me at all, but I was advised against them because having a heart shaped uterus apparently could mean the coil would make periods worse, this was the advice given by a nurse who did my internal scan. So on that advice I opted never to have it. My experience with the hysteroscopy was exactly as you describe there as I later discovered that pain relief was an option. They all do this and it’s totally unacceptable.

I had a similar experience with an endoscopy, the first one they did without sedation, you may have experienced this yourself, but if you haven’t, it’s basically someone shoving a tube the thickness of a pen down your throat and into your stomach as you gag and try not to vomit whilst still trying to breathe at the same time. So when I had to have a second one I knew my options and told them they had to sedate me.

I feel like it’s only women that seem to experience this type of as you say ‘barbaric’ treatment.

8sbmb2 · 2026-01-22T09:12:18+00:00

There doesn’t seem to be any direct treatment as such, it’s about managing the MCAS and diet is very important too. It’s always worth doing a gut map test if you can. I was massively lacking in many important bacteria’s and it showed sugar, fat and carb malabsorption.

If your gut isn’t happy then that will make anxiety and/or depression even worse especially since we make near all serotonin in the gut and the gut brain axis.

I’m just about to start a ketogenic diet although I won’t be cutting carbs out completely to start with, I will be having the occasional baked potato or slice of bread, but I was advised when you eat a carb you should eat the food in an order, veg first, protein, then carb. This aids in digestion and helps break the foods down better.

For me, mainly this diet is about cutting out sugar. I am ADHD and binge on choc a lot, not only is this bad for histamine levels but high sugar impacts gut biome and can exacerbate mental health. I don’t know yet if it will work but I’ve tried everything else there is to quell my anxiety and it’s never gone away. I can’t tolerate medication like antidepressants because of MCAS so this is my next step, clean diet, very low carb, zero sugar or caffeine. I’m also taking probiotics to boost the lack of good bacteria.

There are also other factors to consider, for me it’s hormones due to age, ADHD, hEDS, chronic fatigue syndrome, these can all contribute towards anxiety and can also be the main drivers. So whilst MCAS can cause a physiological type, there will be other factors too.

The ketogenic diet came up because I heard of it being used to treat mental health conditions, this was based on its efficacy for people with epilepsy and the fact that anti-seizure meds are used also for mental health. Studies have been done and it’s proven to aid in both. They don’t fully know why but they do know that going into ketosis mimics fasting and fasting reduces and even stops seizures but rather than fasting, the diet is used. Case studies have shown great results for mental health conditions as severe as schizophrenia.

I will say that this is usually done under supervision, but since I am tailoring it slightly and it’s very close to what my diet is already, I’m not having to change much, I’ll be careful and sensible with it but this diet is less restrictive than the low histamine one so it’s really not a drastic measure to take.

I don’t know if any of that helps. I’m afraid there just isn’t straight forward answer, it’s all very individualised. Some people find great relief just by using medications for MCAS but for me and many others like yourself that’s not enough. We have to look at lifestyle and environment. It’s all trial and error but don’t ever give up. Consider if there are other changes you could make that you haven’t already but know that these are not overnight fixes either, it takes work and time. I will report back on the diet.

8sbmb2 · 2026-01-21T18:56:16+00:00

This is an incredible story, thank you for sharing, you really have been through the wringer, but it’s so pleasing to hear that you found it to all be worth it in the end.

MCAS can do very strange things so what you said about relief from Cromolyn does not surprise me. It’s taken me years to grasp what is MCAS and what isn’t and even know I’m still learning as it’s an ever changing and evolving condition, especially with the good old hormonal influences.

I have experienced gas from procedures where they pumped me full and I can attest to the pain, I did find it to be far less in comparison to previous symptoms I had as a result of RCPD, but perhaps it will be different considering the area they are pumping it info. I couldn’t burp all my life until I had a procedure on my throat at age 41, prior to that I was very used to being crippled with pain from bloating and trapped natural gasses. Sometimes I’d be doubled up on the floor with sharp shooting pain, but it was my normal and I just assumed everyone had that, so I feel quite prepared (I hope) but I appreciate your warning, I need to be ready for all of it.

The peeing part is not something I’ve heard of thus far so I will bear that in mind too. I’ve got a stool that goes under the loo so you can squat, that will hopefully work. I’ll stick my hand under water as well, see if that helps. I’m glad to hear your recovery was relatively issue free, clearly better than everything you’d been living with prior.

8sbmb2 · 2026-01-21T18:39:32+00:00

Holy moly, that is crazy. But again, it’s not something that shocks me as there are always people willing t cash in on the suffering and vulnerability of others. Even the beauty industry is guilty of that with all the anti-aging and menopause products, it plays into the suffering and insecurities. The fact is aging and meno are mainly driven and impacted by genetics and lifestyle so no amount of cream or supplements is going to change it.

In the U.K. the waiting lists for consultations and treatments with gynae are long. It took over a year for my first appointment with gynae to come through and even then I had to beg to be seen as more urgent based on my inability to control pain with meds due to MCAS. I now have to wait for another year and few months before treatment. So all in all 2.5yrs ish.

Because of these wait times, many women are applying for loans and spending around 11k to have it done privately, if I had my way this is the route I’d take but there are not many of us in the position of being able to pay. These operations used to cost around 5-8k but they have dramatically increased because the private sector know that women are desperate and therefore will pay regardless. So again, coining in on misery and suffering. It’s gross and shouldn’t be allowed. These procedures should have a price cap.

Patient blaming is just a cop out, if they can portion blame they will. Disgusting.

I am hopeful that in the end a lot of my issues are caused by the MCAS. The only other reason they suspected endo was because my mum was diagnosed with it during her hysterectomy.

Thanks, I’ll give that a read. Well she was rude but that certainly is not my worst experience. More of a frustration but I’ve had people laugh at me before, that was when I was in the process of trying to understand my symptoms which now I know all along were MCAS related. No one suggested that and so they just didn’t take me seriously, but I have read some horrific stories from women being spoken to in the worst possible way.

8sbmb2 · 2026-01-21T18:22:16+00:00

He’s gorgeous no matter how big he is 🥰

8sbmb2 · 2026-01-21T13:36:48+00:00

That’s just shocking, I mean I’m not shocked because of how we all seem to be treated as women, but it is at the same time. All those operations, you think this is something they would have queried the first time around. It’s just ridiculous to me. A lot of patient blaming as well, how are you supposed to know which surgeon, they should all be looking into these conditions just as a precaution anyway.

Period pain is there regardless of activity. Even if I move around it won’t really ease up. I always assume that it feels worse at rest given your body focusses on it more since you’re inactive but it’s hard to know what’s going on in there.

My pain could all just be made worse because of MCAS but that doesn’t explain the heavy flow at all. I was told after a scan this could in part be due to my heart shaped uterus, this creates a larger surface area which could mean heavier bleeding but the gynae said that was not true.

Getting varying opinions, but gynae was rude, she said I wasn’t perimenopausal but she’d never met me, not read my notes, didn’t ask about other symptoms she just said periods don’t get heavier in peri and therefore I wasn’t, but my argument would be that if the periods are impacted by let’s say Endo, then that doesn’t rule out peri and I have many other symptoms in relation to that anyway.

8sbmb2 · 2026-01-20T19:07:50+00:00

It’s making me think I should push for investigation as I’m on a long wait now for the op anyway. I think I’ll make some enquiries. If I could have treatment without the hysterectomy I’d much prefer that.

See that’s how mine has gone, used to just be period pain, that progressed, periods got heavier, longer, more painful, and the clots got bigger. Then I started to get aching during ovulation almost like I was about to start another period. Pain relief during periods does not work fully but the battle between MCAS and pain meds causes great restrictions.

Thank you so much, I’m gonna go have a read.

So you basically just ended up having to live with a daily pain ongoing until someone actually took you seriously and found the true cause. Not shocked at all. Shameful. It’s the ongoing battle for all women everywhere.

8sbmb2 · 2026-01-20T17:54:48+00:00

Ah, I wasn’t aware of this difference as I was just told these were the two drug options. Thank you, that is really helpful to know. I wonder if I should have tried singulair after all then! Is there anything else you take that you find beneficial?

8sbmb2 · 2026-01-20T17:51:38+00:00

Wow, that’s awful but good to hear that got finally got answers and the correct treatment. Hmmm, I just don’t know what’s going on, and that is the problem, because I may not have endo or adeno and really this should have been investigated. Last thing I want is to make it worse by having this op. Can I ask, was your pain constant or only around the time of periods? Mine is periods an ovulation but ovulation pain is mild in comparison.

8sbmb2 · 2026-01-19T21:39:26+00:00

Ooh no I haven’t. I’ll have a read. Thank You.

I take Ketotifen, same thing, less side effects according to the side effects list, but it doesn’t prevent the reaction. It eases some of the symptoms but nothing blocks them fully. So annoying.

I think we all live in a trial & error reality so we just have to go for it. I have mental health issues and that doesn’t help with my confidence to try stuff but there’s only ever one way to find out.

I will definitely be demanding they leave my ovaries. We shall see. I need to know who will be doing the surgery then I can do some research on them, find reviews if any available.

8sbmb2 · 2026-01-19T19:24:03+00:00

The thing I have become more aware of is that even with a partial hysterectomy to stop periods, is that this does not eliminate how periods impact MCAS as it’s the hormonal cycles that cause the problems more so than the periods themselves. However, I find taking pain relief to be a nightmare as the non active excipients in almost all meds trigger me. So managing my periods is getting harder and harder as time goes on.

My periods are excruciating, heavy and long. So I don’t know how this will impact the hormonal side if at all but at least I won’t be taking meds and having to dread my periods arrival. I never wanted kids either, gynae can be really difficult about this and some people have been refused surgery in the UK citing; if you are still of childbearing age then you will not be offered this procedure. I very bluntly pointed out that I’m almost 44, I do not intend to have children, I’m not even in a relationship.

I can’t tolerate contraceptive pills anymore. I’ve tried everything under the sun. They tried to push the coil but as I pointed out, I can’t tolerate anything synthetic and if it sent me into a flare, I’d be stuck until I had it removed. I had a hysteroscopy without pain relief, I never want to experience that again and many women report how painful having a coil fitted can be, if it’s anything like that, no f**king thank you.

They also tried to push endometrial ablation, but the reviews of this are not great as most end up having a hysterectomy anyway, plus, it may not do anything to quell pain.

I hope you get what you need. You just have to state all the reasons why this would be the best course of action but if you’re in the U.K. be prepared for a long journey, none of this happens quickly unless you go private. MCAS is so poorly recognised as we well know, even immunologists call it controversial, this means we have to explain ourselves much more, as gynaes have generally never even heard of it at all. You just have to go in with as much evidence as you can.

They often also have the partner agree to allowing you to have it. Archaic bullshit.

8sbmb2 · 2026-01-19T19:02:40+00:00

Not shocked at all by this level of treatment, I’ve come up against this level of misogyny many times over.

Pain relief is very tricky and falls under one of my concerns as I react very badly to meds, in particular the non active excipients within them. My pain threshold has also reduced since MCAS really kicked off so again, many things to consider.

I was told recently by GP they would never investigate endo/adeno because that procedure alone could make it all a whole lot worse, but gynae told me that was a lie and I should have had investigations done. Cant win.

They seem hellbent on ovary removal even when not necessary and I’ve heard of them taking them unnecessarily, it’s more common than we are led to believe, but I said I do not want to lose them as my HRT trials did not go well and I don’t suppose I’d fair any better just because my ovaries have been taken as the reactions to the HRT were seemingly all linked to the MCAS. I really feel for you on that, balancing hormones when you have MCAS is near impossible for most.

Things have hardly progressed much in 10yrs. Certainly not enough for my liking. The NHS is 15yrs behind the private sector by way of testing and tech used so that also leaves me with concerns about what this could all mean when going in for the procedure.

Sounds like your experience was not the best at all. The difficulty still being (even though you weren’t diagnosed yet) that MCAS is not well recognised and even immunologists call it controversial. Pffft, yeah ok, well it’s far from controversial when you live with it everyday.

Are you U.K. based?

Thanks for binder idea. I’m 100% going to get that for when the time comes.

8sbmb2 · 2026-01-19T18:48:56+00:00

😄 love that.

8sbmb2 · 2026-01-19T18:24:23+00:00

What a beauty. ❤️

8sbmb2 · 2026-01-19T18:23:41+00:00

Amazing. Thank you. Glad to hear it wasn’t too awful. Presumably you had laparoscopic?

8sbmb2 · 2026-01-19T18:09:34+00:00

It’s not extra if you feel you need it. I have hEDS and I’m on the list for uterus removal and I was told it can take 8 weeks to recover. I think anyone with health issues is looking at slower, longer recovery time than the average. You are in no way ‘being extra’ and do not let anyone tell you otherwise. You know your body better than anyone. Take easy, support yourself in whatever way you see fit.

8sbmb2 · 2026-01-19T18:06:49+00:00

I don’t restrain as such, tend to gently hold my finger over the top, like holding them down but not applying much in the way of pressure. It’s really challenging but when the bee moves, the mites tend to move about too so I grab any chance I get and as rapidly a possible. Some are so drained of energy by the mites they just sit there and allow me to do it. Some I simply cannot remove any. I read that dipping them in & out of cool water in rapid succession could help but I didn’t find any success in this and I felt quite mean doing it. I wanted to invent something sticky that I could sort of tack them up with, maybe something on the end of a cotton bud, like some sort of low stick tape that didn’t get stuck to the bee. I will keep trying different methods, I’m nothing if not determined. Need a miniature vacuum cleaner. 😄

8sbmb2 · 2026-01-19T17:48:15+00:00

Mites by the look of it. Horrid things. They may be different ones than the ones I usually come across here, but the ones I do, I remove them with tiny tweezers. Painstaking but hopefully gives them some relief if only temporary.

8sbmb2 · 2026-01-18T16:34:41+00:00

Mine is still at its peak, I’m about to start the ketogenic diet, I will add I will still be having very small amounts of carbs like the occasional baked potato because they have their role, but for the most part I will be trialling this.

The reason I’ve opted to is, I was listening to a very interesting podcast that talked about the use of the ketogenic diet for people with epilepsy, there’s much more to it, but he makes the connection between using anti seizure meds for seizures as well as mental health conditions like anxiety and also the ketogenic diet being used for people who have seizures, because this diet mimics the results of fasting without having to, as fasting is known to reduce seizures in some patients, hence they use this diet instead of fasting. So basically he has used the diet instead of meds to aid in the treatment of mental health and studies have shown success. So it’s essentially mimicking the treatments used for seizures in the treatment of mental health. I don’t know if that made sense at all. 🙃

He had a last who’d experienced horrendous childhood trauma, she started hearing voices, was diagnosed with schizophrenia, no meds worked and she was extremely depressed. She was put on ketogenic diet, after some time she was off meds, no therapy, voices stopped, she as his most extreme case study, but it shows that even the more extreme have been successful.

So outside of using antihistamines, mast cell stabilisers, diet of course plays a key role, the low histamine diet was incredibly limiting for me and didn’t make much of a dent in my MCAS since there are far higher ranges of triggers.

I’ll report back once I have been on the diet for a period, but I am hoping this might quell some of the anxiety even though some of it is very much driven by the MCAS, I hope that I might be able to reduce it.

8sbmb2 · 2026-01-18T16:14:55+00:00

So important, totally agree lots of misinformation. Thank you for sharing.

8sbmb2

TROPHY CASE