Potential Endo

[emeraldlove]

Hey everyone!! This is a long post so i apologise.

So I’ve only just discovered this page exists and i’m so glad because nobody around me understands this horrible pain i’m in!!

So this has been on going for me since November last year. I was at work , needed the toilet all of a sudden so urgently. I had no pain whatsoever when I was weeing but after i’d finished it was the most horrible pain that i’d ever felt 😓 I went back out to carry on with my clients and I just couldn’t stand up whatsoever , had a glass of cranberry juice which seemed to make it worse for me. So I got sent home, called 111 and got told to try get some over the counter medication called Hiprex. This didn’t work for me whatsoever luckily the next day I was off. So I called 111 again and they said i’d get a call back and was finally prescribed antibiotics, which were of course Macro-Bid. The pain went away but came back in less than a month I was bed bound again , screaming and crying in pain wondering how on earth i’ve got another UTI when I wasn’t sexually active at the time.

This caused me to quit my job because I was constantly letting my manager down , having loads of days off, not feeling motivated anymore just so confused where this had started. I’ve been to A&E over 5 times this year, called 111 so many times, cried to my doctors, etc.

I had a gynaecology appointment booked for next week and they’ve cancelled it and changed it to December !!! So I got a doctors appointment last Friday with a new doctor and he’s the first person to suggest he thinks I have Endometriosis.

I’m basically here wondering if anyone else has the pain deep in their Vagina. I can’t describe the pain but today I pinned it down to “it feels like my uterus is going to fall out”. It sounds ridiculous but I see a lot of posts saying the pain is more lower tummy and back and i’m getting worried because mine is always in the Vagina. I’m currently on the implant which is meant to help but this is completely opposite for me.

I’m going away this weekend and just need some tips for the best pain relief. When I get this pain I will not move off the toilet for up to 4 hours. I’ve tried Codine, Tramdol, Co-Codomal, ampritythine, paracetamol, literally EVERYTHING.

Thanks in advance guys, I really hope people see this because im only 19 and im so worried for the future with this condition 😓

[TennisCourt]

Hey lovely!! I am also undiagnosed but this group is AMAZING. I have learnt so much.

My symptoms are very different to yours but I’m sure there’s someone in here that they are similar too!

So in my experience with the NHS so far as they just do not know much about women’s health. Waiting lists are so long. I’ve been currently battling with them for over two years, got no where.

So I found out in this group you can pay to have a private consultation with a specialist of your choice. It can range from £140-£180 but to me that’s so worth it. I have mine on the 15th of this month and I can’t wait to talk to someone who hopefully won’t gas light me!! Apparently they will help with symptom management, just in general tell you if they thing it’s Endo and steps forward. You can then continue to go back on the NHS if you need the lap etc.

Hope you can get some help soon lovely ❤️ x

[emeraldlove in reply to TennisCourt]

Ah thank you so much beautiful!!!

I’m going to have a look into that now! If you don’t mind me asking what symptoms do you have? ❤️

[TennisCourt in reply to emeraldlove]

Definitely do! If you can afford to I think it’s a brill idea.

I have a lot of gastro symptoms: severe bloating 24/7, Stabby bum pain, one day I’m constipated the next I have diarrhoea.

Off birth control i have extremely heavy and painful periods. On birth control I bleed like 3/4 times a month.

I have belly ache every day, leg pain, back pain, fatigue, I use a hot water bottle on my belly most days.

I’ve had ultrasounds internal and external, blood tests, stool samples, colonoscopy = all clear.

I brought my findings of Endo to my GP she agreed it sounds like it, gastro specialist also said it.

So I’m just fingers crossed for my specialist private appt on 15th to found out more🤞🤞xxx

[emeraldlove in reply to TennisCourt]

I’m literally lying here right now with my hot water bottle, in AGONY!! I wouldn’t mind if the pain was in my tummy but it’s deep in my vagina and it’s just so awful 😓

I give up calling 111 and the GP. Hearing people have had to wait over 7 years for a diagnosis makes me so upset! ❤️

[TennisCourt in reply to emeraldlove]

Bless you that just be awful!! Keep pushing!! Don’t be gaslit by them honestly.

I always have to remind my self that this is not normal and I shouldn’t be suffering therefore I can keep pushing the NHS xx

[Chloe28]

I was diagnosed in 2020, having gone for private treatment. 8 years of fighting the NHS for help/answers was more than enough for me! I quite regularly have the pain deep in the vagina and I can honestly say feeling as though your uterus is going to fall out is as an accurate a description as I have ever come up with!

In terms of pain relief though, I wish I could suggest something that works but am yet to find any painkillers that really touch it. So far only things to have improved it were laparoscopy (but only for about 18 months) then I was put on zoladex for 6 months which honestly felt like a miracle cure. But that took so many referrals and being lucky enough to have moved to an area with an Endo specialist in the local hospital.

I wish I could be of more help to you, it’s absolutely awful!

Hope you manage to get something that works soon!

[emeraldlove in reply to Chloe28]

Thank you so much for replying!

I’ve got an emergency appointment with the GP at 11 today so i’m going to insist now because i’ve been awake all night with horrible pain in the vagina and sides of my body 😢 I’ve never heard of zoladex going to have a little look now.

Thank you!!❤️

[Kieraface]

hi emerald love,

Sorry to hear you’re experiencing such severe pain. It’s incredibly hard to get a diagnosis. Very much like others on here I have been fighting with the NHS about ‘bad period pain/bad periods’ for many many years. Luckily I got private healthcare through work to get my diagnosis. Not everyone can do that and I appreciate that, sadly it just means you have to persevere through the nhs. Push for a gyny referral to speak to a specialist. Hopefully they have managed to catch it early and it hasn’t progressed to stage iv.

As for pain relief, I am struggling with pain relief as I can’t take codeine due to the kink in my bowel from endo. They put me on diclofenic which has taken a bit of the pain away. Unfortunately, I think full removal of pain isn’t possible - or at least this is my experience.

I get lightening crotch, weakness in my legs, severe stomach and uterus pain and sometimes it feels like I’m being stabbed over and over again.

If you’re having abnormal bleeding as well or prolonged bleeding, it maybe worthwhile asking for norethisterone as this is the only way my bleeding stopped. I’m currently 6 days without bleeding now since the 15th may I bled constantly.

To say I understand what you’re going through would be a lie as I don’t know how you feel yourself, but I can definitely relate to the suffering and pain. I hope you find some relief soon and get a diagnosis and treatment to help x

[emeraldlove in reply to Kieraface]

Honestly that’s such an accurate description of the pain😓 I’m on the implant so don’t bleed but last month I bled absolutely everywhere in my sleep it was awful so maybe I need to mention that today to the GP!!

That’s the problem, no pain killer touches this horrible feeling😢 and i absolutely HATE codine. I ended up accidentally overdosing on it because I couldn’t take the pain anymore!! xx

[Kieraface in reply to emeraldlove]

It’s so important to be careful with your medication. As bad as the pain is. The damage from over medicating can be just as severe as the pain: just be mindful.

Diclofenic does seem to help a little, it’s like ibuprofen but far stronger. My gp prescribed it last week. I’ve been on it for about 6 days now. I’m still in pain but I’m not rocking backwards and forwards crying on the bathroom floor anymore! Haha 😅😅

Just count your little wins. Focus on pushing for a referral and speaking to a specialist. try ask your gp for some stronger pain relief and see if that helps.

Also if you struggle sleeping due to the pain, a pillow between the legs can help and taking melatonin before bed can help aid sleep x

[Bmco]

I could not have put it more perfectly than feeling like your uterus will fall out.

I’ve got a gynae appt next week - it’s been several years of being told “it’s PCOS”, “it’s IBS”, “it’s interstitial cystitis”. Many many rounds of unnecessary antibiotics, many stool and blood tests. Endoscopy, colonoscopy to boot! It always baffles me how much money must be being spent on completely wrong paths.

But thankfully recently stumbled across a GP who said she doesn’t think it’s any of that, it’s endo. And the NHS has referred me under a private hospital. Definitely not great for the NHS I appreciate but shows that this pathway can happen at times so there is hope.

Fingers crossed you get seen and some support asap, but this is an amazing group for support regardless x