Symptom flare up

[NikNak98]

Hi, it’s been a while since I posted on here but I’m completely at a loss and to be honest I’m beginning to get really fed up.

I have all the symptoms of Endometriosis but upon doing a laparoscopy, they found nothing but scar tissue.

Fast forward a little while after the surgery, the symptoms have come back but worse than it was before.

I apparently cannot have sexual intercourse with my partner without being in pain. Apparently any type of arousal or even without, I’m in constant pain in that area. I try and fight through the pain but then leads me to bleeding every single time we do it.

I had intercourse the other day and bled during and after, and all through the next day, however, I am 7 days due for ovulation.

I know it’s going to be a waste of time going back to my doctors and everything is just going to be a waste of time because “it’s all in my head” anyway.

I just feel so fed up because every day is a struggle, it’s not just when I’m on my period or anything.

Somebody please tell me what to do because I don’t know how much more I can take 😞

[Tangoandmax]

Hey,

Pain with sex was an initial symptom for me which was also explained away, not taken seriously. Fast forward five years of being fobbed off my symptoms got significantly worse, so much so that we stopped all intimacy (could not endure the pain before, during or after). This has obviously had a significant impact on my relationship. My GP then only took this seriously as I’d also started to bleed post sex. They then also realised I could not tolerate any examination or even a smear.

I would go back, demand a referral to gyne. Bleeding post sex isn’t normal, for me this turned out to be a cervical ectropian which could not be treated as I couldn’t endure the speculum. The severe pain during sex was a result of my organs being tethered together, your uterus is supposed to be mobile, mine wasn’t which meant inserting anything inside me was like being stabbed -queue hysterical crying (every-time).

Was your lap previously carried out by a general gyne? We’re seeing in a lot of instances they get a lot wrong when it comes to endometriosis. Was scar tissue checked to ensure organs were free moving and nothing attached to each other? I had an MRI in feb which showed the tethering, it’s absolutely worth starting again with the process of this is impacting your life.

I would say you really need to lay it on, turn up with a detailed record of symptoms, they should absolutely at a minimum check your cervix for causes of bleeding. Specifically if your smear was some time ago. People severely underestimate the mental toll this takes. The waiting lists are hugely problematic at the moment, if you can afford a private consult with a gyne specialist (£200/300) it would absolutely worth getting their opinion. You could subject access request all information/images from the NHS hospital where you had your lap and take them with you. You’d likely need to pay for up to date scans but this would confirm what’s going on much quicker!

I’m so sorry you’re going through it, it’s awful. X

[Purpleindigo in reply to Tangoandmax]

I completely agree with everything Tangoandmax has said.

As an extra you can read NICE and RCOG guidance surrounding unexplained vaginal bleeding and endometriosis. These guidelines include symptoms and timescales clinicians should investigate/refer for.

If your local hospital is in breach of these (I.e. not referring you, not completing the recommended investigations, no completed within recommended time frame) complete a PALS complaint and quote these guidelines.

For extra oomph you can refer your case to the CQC and get a reference number. If you add this into your PALS complaint I guarantee things will move quicker.

I was on the 'urgent surgical endometriosis list' for >40 weeks (target is 18 weeks) I did the above and miraculously had surgery booked for the week following the complaint.

[Tangoandmax in reply to Purpleindigo]

Honestly the lengths you have to go to, to be taken seriously/receive a minimum level care is appalling.

I’ve only seen progress in the past two years, and wouldn’t have that had I not complained to PALS.

[NikNak98 in reply to Tangoandmax]

Hey,

Thank you so much for responding and I’m really sorry to hear that you are going through the same thing 😞

When I had the Lap done, it was done by a specialist Gynae (specialises in Endo) and what they found was that my right fallopian tube was wrapped up in scar tissue from when I had my appendix removed when I was 10.

She did say that even though they didn’t find anything then, doesn’t mean they won’t find anything in the future because endo is so hard to get diagnosed! But she did say that if my symptoms persist go back to GP and get another referral but honestly, the GP’s are absolutely shocking and after being gaslighted by them by saying it’s all in my head is what is stopping me from going back.

I am literally at my wits end right now and even though my partner is completely acceptant of the fact that I cannot give him sex because it’s too painful, I feel so much guilt that I as a 25 year old female cannot enjoy intercourse or anything else for that matter because of this. X

[Tangoandmax in reply to NikNak98]

I would suggest requesting an alternate GP if you haven’t done so already. I was passed from doctor to doctor, none of them helped/believed me and hindered my diagnosis/treatment. I’ve eventually found an empathetic female who does try her best to help. I now refuse to see anyone else.

It is absolutely awful, I had to use children as a tool to force their hand (which I really did not want to do) I’d been having problems from 25 onwards. I’m now 33 and we have no children, couldn’t even try. They tend to take this seriously and if you can’t endure any intimacy at all this is completely problematic for pregnancy. If you’re in the same boat, it’s worth mentioning to them.

My partner has also thankfully been hugely supportive but it doesn’t stop the constant guilt, I completely understand that feeling. Mentally it’s a lot, but it’s not our fault. I’ve let go of a lot of the guilt, however I’m now just really angry we/people are left to live like this.

It’s always worth a complaint if you don’t get anywhere. We can’t settle for rubbish care, it’s their job to diagnose and treat people, anytime they are not doing anything to achieve either - please complain. It’s the only way to really hold them accountable and get anywhere. Otherwise they’re going to continue to treat you/people this way xx 🤍

[NikNak98 in reply to Tangoandmax]

I definitely will find another doctor and will continue to fight for myself!

I am glad you have found a doctor who is now your go to and one that actually listens!

I will defo complain if I have too! Let’s hope I get somewhere this time😩

Thank you so much for your help & advice! I really do appreciate it!😊🩷