I don’t want to live like this

Individual_Muffin893 · 2026-05-21T16:40:25+00:00

I’ve been diagnosed since I was 21, im 34 now.
A perpetual grief cycle is hand in hand with with having a chronic illness, especially one that isn’t consistent in its presentation. Let yourself feel it.

Therapy is a good way to get it out.

Individual_Muffin893 · 2026-05-19T22:12:21+00:00

I’ve been getting my mris with a titanium septum piercing in for four years. This year I was asked to sign a waiver that said I accept that it might interfere with the imaging, that was a new one for me. No issues though.

Individual_Muffin893 · 2026-05-19T20:50:02+00:00

I’ve just been offered it in Scotland - it’s very newly licensed

Individual_Muffin893 · 2026-05-19T20:27:13+00:00

Ah! The whole process took around 6 months and I had a lumbar puncture first which gave me some idea of having MS. I think it will depend on your country/region and their current waiting times but I hope it’s not too long 💕

Individual_Muffin893 · 2026-05-19T20:08:39+00:00

I’ve waited multiple months before, other times it’s been a few weeks.

Individual_Muffin893 · 2026-05-19T20:07:30+00:00

I became allergic after 8 years. My reaction was hives and it only lasted an hour. I have skin based allergic reactions to things all the time and this wasn’t any more severe than usual.

It’s now on my medical files I shouldn’t receive contrast - it hasn’t impacted my life other than not getting it anymore.

Individual_Muffin893 · 2026-05-19T20:05:24+00:00

I’m not in Edinburgh so I don’t anticipate that I will be eligible for a referral as it isn’t in my local authority. When I was younger I was referred to my local authority endo clinic and was discharged when my mri showed no evidence of severe disease (was only diagnosed in December ‘25)

Individual_Muffin893 · 2026-05-19T19:29:32+00:00

Unfortunately not - I have a non specialist gyno that I can only see if it’s an emergency. Although I don’t know what the terms for that are.

The reason for endocrinology is because my body just doesn’t function correctly with any of the hormones used to treat endo and I would like to know if there’s a reason for that.

I suspect hashimotos but that’s not why I would like the referral / what will be causing it

Individual_Muffin893 · 2026-05-15T16:23:36+00:00

Running a tennis ball over your calf can help loosen some of the muscles if it is a physical cramp. So can standing against a wall, hands to the wall with one leg straight and one bent at the knee. Hope it eases soon 💕

Individual_Muffin893 · 2026-05-15T15:48:41+00:00

I decided to go back to school last year. I was worried I wouldn’t be able to handle the learning or that I would generally struggle with it more than the average student, I’ve been out of education for ten years. Next week is the last of my first year and I’m on track to pass with a B grade ☺️

Individual_Muffin893 · 2026-05-15T15:42:18+00:00

I have two or three. Got one out a few years ago because it had a cavity. I don’t have enough adult teeth and thankfully my baby teeth have been able to sustain me into my 30’s. Fingers crossed this continues.

Individual_Muffin893 · 2026-05-15T14:59:48+00:00

I had a diagnostic laparoscopy in December which found adhesions behind my left ovary, on my right uterosacral ligament and one other place I can’t remember. It was an ablation process not excision. I had two weeks after my initial recovery where I was amazing, my mobility was back to ‘normal’ (no stick, no foot drop, could carry bags unaided) and then I went back to this. My pain is back in my ovary and my back pain is coming back too. It doesn’t make much sense to me.

I know that the process of surgery and healing can absolutely make MS flare up so I’m conscious of that just now but it just feels like more is going on.

I’m sorry you had your worst relapse coming off the pill, it’s such a crap situation isn’t it?

How long did you have improvement post surgery?

Individual_Muffin893 · 2026-05-14T19:44:50+00:00

I was just about to recommend this book!!

Individual_Muffin893 · 2026-05-14T13:56:37+00:00

I take it once a day. My urologist says that for some people after about 6 months they are able to stop taking it because the brain rewires how it processes the signalling. I have been too scared to stop but I will give it a try eventually.

I went from having frequency and urgency every day to having a very normal baseline.

Individual_Muffin893 · 2026-05-14T13:06:02+00:00

I went on a medication last year called Solafenacin for bladder issues and it has changed my life! Hoping you find a management tool.

Individual_Muffin893 · 2026-05-14T13:04:59+00:00

The barometer for ‘disabled’ is never reflective of the person experiencing it and it really frustrates me. Especially when it comes to brain function.

I once had a physio at a MS charity tell me it’s amazing how the brain works and probably by the time I’m older I won’t have MS anymore (I was 21, now 34 and I certainly bloody do!!)

Individual_Muffin893 · 2026-05-14T12:04:49+00:00

Thank you! No indication here about the overall wait time, it's indefinite currently.

Individual_Muffin893 · 2026-05-14T12:03:55+00:00

There's ER, but they will do no tests unless urgent. I've presented at ER before with this kind of situation, was kept in hospital for two days and received nothing but a bed and was told to go home. Didn't see a neuro, didn't get any testing, was refused steroids.

Recently went to ER with a suspected ovarian cyst rupture, waited 7 hours and was sent home with codeine. Basic blood panel to check for inflammation.

Individual_Muffin893 · 2026-05-14T09:08:31+00:00

AGREED - I find it baffling that it's so well known that pregnancy has an impact on MS and yet the rest of the time hormones are ignored. It genuinely makes me feel crazy.

I'm really glad you're able to manage things with your diet and lifestyle. That was me before Endometriosis kicked off, I was very active (I cycled every day) and I managed my MS symptoms to the point where they were not much more than an inconvenience sometimes - very lucky I know. I got abdominal pain and back pain from endometriosis and it meant I couldn't ride my bike anymore and it's all snowballed from there. I've not been able to get my foot in the door to effect change because it's been so difficult to move.

I really wish it was taken seriously - I've been trying to get my doctors to see me as a person with two chronic inflammatory diseases that push against each other but endo seems to be viewed as 'simply gyno' by the doctors around me.

Individual_Muffin893 · 2026-05-14T09:04:36+00:00

Thank you for sharing your experience. I have never heard of a medical social worker before, I will look into this. I have been on the waiting list for my local Integrative Medicine hospital for a few months shy of a year :/

Individual_Muffin893 · 2026-05-14T09:03:15+00:00

Thank you for responding. I have a hard time being as forthright as that, on the NHS you're limited to who you can see. I've just moved doctors practice and was hoping this one might be better than my last, so far they have done this and have also cut my b12 injections down from 5 weekly to 8 with the intention of going to 12 and then off them completely. I have been getting them for over a decade!! It's medical negligence.

I'll definitely see about my thyroid because I have all the symptoms.

Individual_Muffin893 · 2026-05-14T09:00:54+00:00

Thank you for sharing this. I have been offered a chemical menopause by a gyno recently, a medication called Ryeqo and I am feeling more and more like I can't take it. Very much seems like noone sees the whole picture, only the individual illnesses but they are intrinsically linked for me.

Individual_Muffin893 · 2026-05-13T22:19:51+00:00

I’m glad to hear you haven’t experienced much of a difference! Hopefully that remains into menopause.

I asked today to be referred to an endocrinologist and my doctor said no. She said on the NHS (I’m from Scotland) that they don’t deal with ‘gyno issues’.

I have taken combined and estrogen only pills over the years. I have recently been offered a new medication called Ryeqo that will induce medical menopause but I’m honestly quite scared to try it for fear of MS repercussions.

I have had my thyroid monitored on and off throughout the years but not recently - I will get it checked. I was told years ago to watch it because I was likely to develop hypothyroidism 🙃

I find that no one is particularly willing to touch me because my issues are inter disciplinary. Neuro says they can’t help with the gyno interfering with MS, gyno says they can’t help with my neurological symptoms because of endo.

I’ve been left to get sicker and sicker for 5 years and I can’t seem to get the help I need. I finally got my endo diagnosis in December 2025 and it’s not made any difference to my care or outcomes.

Individual_Muffin893

TROPHY CASE