Waiting for endo diagnosis.. I feel women know more than drs. Advice and stories welcome :)

[anotherworrier]

Hi all, I'm new to the community. I've issues like painful sex, heavy periods, illnesses without an explanation for as long as I can remember. Last year I had biopsy after previously finding CIN3 and received a letter back stating 'the sampl has shown changes consistent with a condition called endometriosis but that would explain why your smear was high grade'

I'm yet to find the link between high grade and endo but hopefully they'll answer that in my next apt.

My recent period started almost a week ago, the day before it started I started throwing up and it hasn't stopped since. I was ok ish on day 3, then the following day I woke up in so much pain that I thought it was the pain that was making me vomit but it hasn't stopped since. GP reckons it's a bug.. I've been researching the link between low immune system and endo as up until approx 4 yrs ago I got ill maybe once a year. Now it's like every other month. I had to fix up my diet because anemia had me pretty much in bed for 3-4months.. I was put on tranexamic acid as I was going through tampon and pad within an hour. Since being on them I can go about three hours which is just honestly wonderful. The pain hasn't stopped though

I've been trying to find out more about going private instead of relying on the NHS as it takes 2 months to get a letter back and about 6 months for an appointment with the gyne. Has anyone in the UK had an experience with going private? The dr I'm seeing is highlighted as the lead clinician in endo in both NHS and nearby private hospital but I'm terrible with waiting.

A lot of people have said the only way to diagnose is through laparoscopy. Are they hard to get?

Anyone with any advice or similar stories? Thanks xx

[luthien]

Hey, wow, your symptoms sound awful *hugs*

I posted a while back on my story, from start of periods to treatment and a bit beyond, so feel free to have a read, it saves repetition

healthunlocked.com/endometr...

I went privately for my treatment just because I felt the NHS was taking ages , it really isn't set up to cope with our problems, it's awful that even though we're in pain we have to wait ages with no communication and then not even sure if the consultant we're seeing is a specialist. I'm happy to help with any questions

I found this health unlocked site really useful as there's loads of lovely women on here (and supportive boyfriends / partners / husbands / other halves). Have a browse through the two sites

Endometriosis UK

The UK Charity and founder of this health unlocked page, they have lots of info on there.

endometriosis-uk.org/

NICE Endometriosis

The UK guidelines doctors should be following for diagnosis and treatment of endo. I found it helpful to know what doctors should be doing.

nice.org.uk/guidance/ng73

You're right that the only formal diagnosis for endo is a laparoscopy; this should in reality be easy to go for but under the NHS if you have a general gynaecologist most often they'll try hormones first. I feel that's really not the right approach as you need to know what you're dealing with and treat appropriately. So a laparoscopy needs to be carried out by an endo specialist so they can visually check all of the bladder, uterus and bowels. I found going privately meant I could have the diagnostic lap and excision of endo in the same op meaning i could focus on recovery. The NHS tends to do the diagnostic with general gynae (so just the uterus) then you go back on the waiting list to see a consultant. I preferred private because your consultant is your consultant and they'll do the lap, see you for any appointments, so you are their case all the way through.

I was lucky though with mine as I had health insurance through my work so they paid for it. Having said that if you've not had your diagnostic lap or any invasive treatment via the NHS then your condition is new and thus you can get your own private insurance through say someone like BUPA, most private centers have their own payment plans, and quite a lot of large companies do health insurance / spouse insurance.

xx

[anotherworrier in reply to luthien]

Hi! Wow you’ve been through so much!

I’ll have a look at those lists, I think they’ll calm down a bit if I know more about what to expect. I’m so happy that you were able to go private, it sounds like it made it a lot easier on you. I’m going to see if I or my husband have something similar through work.

Thank you for your response 💛

[Whoisthis]

Hi, I also had CIN3 cells removed in my 20s, now in my 40s with endo and waiting on my lap.

I had another colonoscopy recently as they said they cervix was feeling a bit bumpy?

I’ve never been told of a link or even mentioned a link at all, so be interested to see and research that.

Xxx