Near diagnosis, lack of support and a whole lot of questions!

[ArtyPal]

I got a near diagnosis this year after 5 years of pestering and demanding help from the doctors (I still need the surgery to 100% confirm but we're pretty certain it's endo) however it hasn't been a nice experience. I thought I'd feel relieved with an answer but I'm still not getting much help. For example, I went to the gyno because I bleed a lot during sex, and my gyno told me she'd apply a silver paste to my cervix that's "like a lipgloss" but it was literally silver nitrate. Due to the misleading information and ridiculous sugar coating (I mean I have so many issues, why are we sugar coating one procedure?) I ended up really freaking out because I ended up bleeding heavily afterwards, and it was my local gp that put my mind at ease when he told me what had actually happened. I'm now on a new birth control that so far hasn't given me a period in three months, but it's safe to say I haven't had much comfort or understanding during this (even got shrugged off when I asked about fertility and if endo was why my IBS was worse than my other family members)

I now have a new symtom I believe, but nobody to talk to about it and it feels silly to be embarrassed even though I can't help it. Does it affect your bladder? I've found it recently that I can't control it one bit, even if I go to the loo really regularly, it's almost like my body tries to wee even if I slightly move when I'm sat down, and sometimes comes on really suddenly and almost aggressively (pangy pain)

Is there an answer to this or a way to help? I feel like having a community might help a little while I wait for my next gyno consultation (though I get no communication so we'll never know when that is lol)

[Moon_maiden]

HiYou’ve been through it that’s for sure.

Is gynae that’s said it’s endo or GP?

I know what the pestering does to you, very soul destroying that you have to keep asking for help from doctors who are there to help 🤦‍♀️

It’s really important to get the right gynae who can deal with endo whilst considering fertility.

You should get bladder checked out with GP, could be related, but might be something easily dealt with as a uti which they can treat very quickly.

The GP can also push to get your gynae appointment sooner, no guarantees but you never know.

How are you feeling in yourself with hot all?

[ArtyPal in reply to Moon_maiden]

Hey! Thanks for your lovely response! It was my gynae that said all this, she told me on a phone appointment that she's certain it's endo but when I went in person she would completely disregard any of my questions and concerns. I had only involved my GP after I saw her for a procedure, when she didn't tell me that she had used silver nitrate - she sugar coated it as it being a silver paste that's similar to lipgloss - so I massively freaked out when I was heavily bleeding afterwards.

It's almost went from having useless and mean GPs for years, to finally getting a gynae (who's supposed to specialise in endo and help) who made me feel completely pushed aside

I also found out (on this group actually!) that MRIs can potentially detect it, so I have emailed a few private practices because I'd really like to know for sure so I can go back to my gynae with facts and make a plan/or just get an entirely new person!

If I had told you how I felt when I posted this question it'd be that I've felt alone, disregarded, frustrated and scared. But having been able to read so many posts on a community board that I had no Idea existed, I do still feel those things but I also feel more hopeful and a bit more confident to get these answers. I've spent 5 and a half years being thrown about by GPs and gynaes so I'm definitely going to be a bit more stern and demand answers for my body!

My grandma had the surgery for it and with everything I've heard it seems like fertility and periods have been an issue with the whole family, so I feel confident that it is this and so did my gynae, but for some reason she keeps disregarding my questions and will to find out for good 🥺

[Moon_maiden in reply to ArtyPal]

You come across as feeling a. It better today 🙂 more determined It can run in families, my aunt, paternal, had a hysterectomy in her thirties, my mum had hysterectomy, from what she’s told me I reckon she had endo as terrible issues with bowel and gynae. I was a difficult birth apparently

Will your GP refer for MRI? It’s the least useless of scans. I did pay for two areas last year £400, a single one was £250.

I initially paid to see gynae who diagnosed endo, NHS had been a let down all year, 2019. If you make sure they do NHS as well, they can add you to their list if they choose to.

It’s important to find a gynae who is honest, helpful and willing to answer queries?

What procedure was it that involved silver nitrate? You don’t have to say if you’d prefer not 🙂

The endo uk site has great info on consultations and fertility.

I had hysterectomy with endo specialist, now seeing a different team as the first one made no notes about checking elsewhere and backtracked when I queried it all as still have the same pains.

[ArtyPal in reply to Moon_maiden]

I definitely feel better today, a lot less stressed! I'll call my GP to see if they'll refer me, they're not always too helpful but definitely worth a try while I wait to hear from other practices

I'll definitely make sure they do the NHS too!

Yeah I'm happy to say! So I had went to the gynae for a pelvic examination and we had discussed before how I bled a lot during sex and that it was super heavy so she told me she'd apply a silver paste to my cervix and anywhere else needing it. On the day, she said again about silver paste and how it's "a bit like a lipgloss" and I thought nothing of it, but I was bleeding for days afterwards and called her in a bit of a panic cause she only told me that I may lightly spot. She shrugged me off so I called my GP and it was actually my GP who informed me that it was in fact, silver nitrate and that she was burning the wounds and tears together!

Obviously I'd have been fine knowing that at the time, it has stopped the bleeding from sex (albeit it's still mega sore) but I'm just so shaken up with the fact that she was sugar coating something that important. Like you've already got your hands and 3 sets of eyes looking at my area, do you really think silver nitrate would cross the line? 😭😂 It just put me off a little bit, I'd love to not deal with her for a while

I'll definitely look at endo UK for consultants, thanks so much!

[Moon_maiden in reply to ArtyPal]

I gave up worrying about contacting GP surgery. I expect to get the help to get better. That really doesn’t sound comfortable, very harsh in a sensitive area, she should have warned you, it gives a chance for an informed decision. Not surprised you won’t see her again. Gut instinct is very important.

When I saw endo gynae last year he diagnosed a Vulva condition called Lichen Sclerosus, it’s considered autoimmune and the skin goes white and causes areas to fuse together. When he did op he was still convinced it was that, but took a biopsy. The result threw him as it came back as keratosis, looks nothing like that and totally like the Lichen Sclerosus. I do agree with his initial thoughts, he’s referred me to the vulva clinic, run by dermatologist and gynaecologist.

Endo UK has a telephone helpline as well for support. They won’t recommend specific consultants on the site, I printed off info and poster and gave to GP surgery for their section for woman’s health on the wall.