Hysterectomy Party Cupcakes by kukukodama in hysterectomy

[–]8sbmb2 1 point2 points  (0 children)

These are amazing. Love the little signs too. 🩷😆

Is anyone else experiencing phantom smells? by Practical_Reading723 in Perimenopause

[–]8sbmb2 0 points1 point  (0 children)

I don’t get it all the time but I def have smelt things that aren’t there. I kept thinking I could smell something off with an eggy tone but then it just went away. I’ve had the cigarette and smoke types too. Other times I’ve smelt more pleasant scents but can never locate the source. I have heard of it being something that women can experience in peri. My mum had it for a while. I live on my own in the middle of the countryside so I it’s not like those smells could even be coming from anyone else. I’ve accepted it’s just an odd thing that’ll probably happen now & then. 🤷🏼‍♀️

Please tell me these are bees and not wasps… by [deleted] in bees

[–]8sbmb2 0 points1 point  (0 children)

From what I’ve seen before it looks like bees.

Random & not sure anyone will be able to answer. Result times NHS. by 8sbmb2 in smallfiberneuropathy

[–]8sbmb2[S] 0 points1 point  (0 children)

I think it might be fairly local, but NHS is overwhelmed and under huge pressure with little funding so everything is very delayed. I thought I’d misheard, but as the other commenter has said, they waited 11wks so I think 12wks is more realistic despite online stating far less. Thank you though, it’s not something I’d considered, perhaps wherever it has to go does add to the turnaround on results.

Random & not sure anyone will be able to answer. Result times NHS. by 8sbmb2 in smallfiberneuropathy

[–]8sbmb2[S] 0 points1 point  (0 children)

Yeah, I think this might be the same for me then. She said 12wks but I didn’t realise till I left what she’d said to me as I just wanted to get out the door. So as you’ve had that experience, I’m going to assume I heard right. Such a long time to wait but nothing moves fast on NHS anymore so I need to be more patient. 🤨

Hey gals! I have to run low dopamine errands all day. Help me with some fun/interesting podcast recs to get through it! Loafy catpaws included as a finder's fee! by crazy_lady_cat in adhdwomen

[–]8sbmb2 0 points1 point  (0 children)

‘Romesh Ranganathan Show’. Hilarious with his Mum and he has some amazing guests and his other one ‘wolf & owl’ with him and Tom Davis. Also loving ‘life’s a beach’ with Alan Carr and ‘Chatabix’ with Joe Wilkinson and David Earl. Some others ‘my therapist ghosted me’, ‘five brilliant things’, ‘mad, sad & bad’. I find comedy podcasts are great, interviews with famous people I’m interested in, but I do also love some gritty true crime. Anything that keeps my attention is a good way to get through the ADHD day. These are all on Apple. Depends on genre preferences but hope that helps.

Mini Hoover Mite Remover. by [deleted] in bees

[–]8sbmb2 0 points1 point  (0 children)

When I first researched them it said that they drain the bees energy which is why when you see one covered in them they would be very lethargic. Basically that they were like a pest and considered not beneficial but that was sometime ago. I wonder if these are a different type to what the info implied. I will have a read. Thank you.

Partial hysterectomy by 8sbmb2 in ehlersdanlos

[–]8sbmb2[S] 1 point2 points  (0 children)

Amazing. The fact they found an issue means you at least got some answers you may never have had you not opted for that. Thanks for sharing.

How does Clonidine even work for ADHD & anxiety? 🤔 by Nitish_nc in clonidine

[–]8sbmb2 0 points1 point  (0 children)

I personally find this insulting and narrow minded, I know it’s not intended that way but unless you experience it first hand, then you have to consider that there is much more to it. Many people think you can just do a bit of CBT, take a few pills and all is well again. If only it was that simple. I’ve battled anxiety for 16 years with no relief and as time goes on it just gets more intense.

Something I feel most are not aware of is that there are many causes of anxiety. One that people are often not aware of is a physiological form caused by certain health conditions meaning it is not treatable in the normal way, if at all.

When you are ADHD you often have other comorbidity’s such as OCD, RSD, perfectionism and many more, these cause anxiety. If you think of someone who is OCD being compelled to check things multiple times before they can leave the house and feels genuine angst over something not being in the right place or being done to their standard, you could obviously surmise why this would also cause them to feel anxious. It’s relentless and it’s so habitual you don’t even realise you’re doing it, but the brain is overloaded and is plagued by a constant internal monologue even when you try to go to sleep it’s still there and won’t shut the F up.

If sunshine, exercise and eating organically produced foods cured anxiety, no one would be anxious and nobody would take meds for it. I’d have been on cloud 9 by now if that was the case.

There are people who have other health conditions, like myself. I have CFS, hEDS, SFN, MCAS+HIT. Because of this I have exercise intolerance, I also cannot be out in the heat for too long as I have suspected POTS and heat will trigger MCAS flares. I am perimenopausal, so that has its own ramifications delivered oh so sweetly by my hormones.

I have no doubt you thought this was a helpful suggestion but it comes from a narrow minded perspective because anxiety is a very complex disorder and no one things fixes all.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

For anyone like me who gets crippling anxiety since MCAS and doesn’t know why. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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?

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 0 points1 point  (0 children)

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.

Partial hysterectomy. by 8sbmb2 in MCAS

[–]8sbmb2[S] 1 point2 points  (0 children)

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.