▲ 3 r/IBD

Could my misdiagnosed endometriosis have been IBD all along?

I have always had heavy and nasty periods but about 7 years ago I started having constant left sided pain that got worse around my period, as well as real bad poops. I went to a GP who did a stool test (don't know what was tested exactly but it wasn't done when I was in a flare) who sent me to gynae who said it was probably endo. It took 6 years to get an MRI which showed adhesions on my bowel and issues there which got blamed on endometriosis. Fast forward and I had a laparoscopy done which was negative for endo and apparently ruled out all gynae issues. So I started looking into misdiagnosis and IBD seems to match my symptoms. They are:

Either constant diarrhea or constipation, no in-between.

Fatigue

Weird rashes

Joint pains

Vitamin D deficiency

Low folate

Horrible left sided pain which can also sometimes show up on the right

"Lightning bum"- feels like being stabbed in the butthole.

No ability to control when I poop- when it's happening it's happening.

Hair loss in flare ups.

Pain that's worse around my period but always there.

Random food intolerances.

Total NSAID intolerance.

So does this sound like something I need to query with my GP? Has anyone been misdiagnosed like this?

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u/Efficient_Ad_5785 — 24 hours ago
▲ 3 r/PMDD

Prozac sweat... Please help a girl out!

I saw a psychiatrist who upped my Prozac to 60mg a day... He said I had to do a minimum of 3 months on this dose, then an SNRI, or I'd basically never be considered for a hysterectomy. I've already done every hormonal everything and it never helped me. I don't want kids and I have awful periods so I know the surgery is what I want. Problem is that I'm on the 60mg of Prozac through the hottest time of the year and I am sweating like a mf.

I'm a fat lady so summer heat is never my bestie but I have never ever experienced sweat like it. I went up to 60mg on Tuesday and I am sweating through my clothes every day and sheets every night. I'm chugging water to keep hydrated but if I dare go out my hair is PLASTERED to me and I literally leave sweat marks on seats. It's so grim. Any advice for getting through the next 3 months of sweaty torture?

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u/Efficient_Ad_5785 — 1 day ago
▲ 2 r/PMDD

Could it have been PMDD all along??

​

I (31F) have always had severe periods. Heavy bleeding, huge pain, absolutely exhausted, eat like an animal, bowel issues, etc. I was always told I had endo but no medical treatments helped and it was only a few months ago that they did a lap to properly diagnose me. An MRI showed stage 4 endo but then apparently the surgery showed nothing. In the last maybe 3 years I've had increasingly severe psychological symptoms which have escalated to very extreme places where I'm a danger to myself and others.

I was finally formally diagnosed with PMDD this week by a psychiatrist, but he also said my pain was "medical anxiety" which I do not believe.

I've been reading up on the pain side of PMDD and I'm wondering if that could have caused it all along.

Does anyone else experience severe pain with PMDD?

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u/Efficient_Ad_5785 — 8 days ago

Can I secretly record calls/appointments with my NHS consultants?

In Wales.

I have had gynae/other issues for over a decade that I won't go into massive detail about here, but safe to say it's on the extreme end of things.

I've been with my current health board for 3 years, but only actually been seen for a year. In that year, my consultant lied to my face at every turn. He told me at my first appointment that if I wanted a hysterectomy I needed to lose 40lb. In 6 months I lost 50lb by really extreme methods (I have no thyroid so it's hard to lose weight and I literally made myself unwell to drop the weight). I got to the follow up and he said he never said that and he refused to do the hysterectomy. He then wanted me on a new medication that causes a temporary menopause. I asked if it would make me gain weight back, he said absolutely not. Spoiler, it did, and then he looked me in the eye and said he warned me I'd gain weight on it and now I was too fat for a hysterectomy again.

Of 12 appointments I've had scheduled in the last 18 months, he's showed up to 3. The others have been cancelled each with less than an hour's notice and zero reasoning. It takes me 3 hours to travel to where he works and each of the missed appointments I took the entire day off work to attend only for him to cancel when I'm en route. It drives me mad.

I had an MRI a year ago which showed extensive adhesions and deep infiltrating endo across multiple organs. I had a laparoscopic surgery this year and when I woke up he told me he'd removed things tethering organs together etc. I was discharged 2 hours after I woke up, still in agony and really disoriented, but I remember that conversation. I've had complications since that surgery- no bladder control, a constant UTI, bleeding, and pain that's landed me in A&E. On my last A&E visit the very nice doctor looked at my surgical report (I haven't even had anything explained to me, I don't know what they did to me, so I asked) and told me that they didn't find any endometriosis.

Now given the MRI, and what I was told after surgery, I was in shock. Apparently they found some lesions but didn't biopsy them to see what they were but that's all the guy could really see.

I have a call scheduled with my consultant in 2 weeks. I want to record the call to make him talk through the MRI, the surgery report, and ask lots of questions. But I also don't trust him not to lie. I've tried raising complaints before but he denies everything and because it's his word against mine, I was dismissed. I want to record the calls and appointments going forward to prove he's lying to me. So, legally, can I start recording our interactions secretly, and if I do, can I use that as a basis for medical negligence?

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u/Efficient_Ad_5785 — 19 days ago

Mirena strings lost...

TW: PMDD and SI.

I (30f) had a Mirena inserted during a lap about a month ago. I had a bad PMDD reaction to it and I want it taken out. I've been actively suicidal for about 3 weeks now.I went to a sexual health clinic today and the nurse (51 years experience fyi) couldn't find any strings.

I have also had pain and a possible UTI (definitely an infection of some kind) for about 3 weeks: low grade fever, pain, peeing constantly. The nurse said it's possible that the mirena could be causing those issues, so I called my gynae consultant and left a message with the secretary but I haven't heard back. I'm seeing my GP today about antibiotics.

I was booked an appointment for them to try again in a month, but with my PMDD symptoms I really need this thing out asap. I'm also pretty concerned that they can't find the string. I tried having one before and my body expelled it- that definitely hasn't happened this time (I'd have seen it come out I'm sure). I wasn't really able to tolerate a speculum full stop (trauma, endo, adeno) so I'm fucking terrified for when the next doctor is fucking rummaging around my vagina...

If they can't find it, or I can't cope with the pain of them looking, what happens next??

Has anyone been through this?

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u/Efficient_Ad_5785 — 2 months ago

NHS hysterectomy without a diagnosis of anything?

Has anyone in the UK managed to get a hysterectomy without a diagnosis of anything? I technically have a PMDD diagnosis, but nobody seems to care about that. I had a lap for the apparently stage 4 endo that showed on an MRI and was told they found nothing. I have bowel issues, bladder issues, a numb leg on one side that doesn't even have reflexes anymore, my weight keeps ballooning, I'm off work and about to get the chop, and I haven't stopped bleeding for 7 months. To top it off I felt coerced into getting a Mirena during my lap which has sent my PMDD into overdrive so now apparently that's the cause of the bleeding even though I've only had it a month out of the seven I've bled for.

All I want is a hysterectomy to end the complete insanity in my head with the PMDD and to stop bleeding but apparently nothing is wrong with me and I might decide to have kids (I'm 31, married, together 12 years, don't want kids) and they won't even consider it.

Has anyone managed it???

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u/Efficient_Ad_5785 — 2 months ago

My mini, Violet, has been on a bland diet for a week or so following a spay and a nasty bout of HGE. We've noticed that since she's been on it, her coat feels softer, her breath is much better, she generally stinks less, and she's got more energy.

She's on white fish, chicken, rice and egg. Does anyone have info/ideas for what I'd need to add to her diet to make it nutritionally complete? Can I do this in a healthy way for her?

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u/Efficient_Ad_5785 — 2 months ago
▲ 2 r/Endo

I had my lap 3 weeks ago, and have just started having UTI symptoms. I'm a bit feverish, sore tummy, burns when I pee, and peeing blood. My mum gets UTIs all the time, I've only had one before, but it's a pretty textbook case.

However, I can't get to a doctor until Tuesday (it's Saturday night here) because it's a bank holiday weekend. I don't drive so I can only get to A&E via ambulance. I don't want to be a drama queen. Should I tough this out work the sachet meds, or bite the bullet and call 111?

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u/Efficient_Ad_5785 — 2 months ago