Feeling lost ...

[Echo1999]

I never write on these types of things as reaching out is a big thing for me, but today I am completely at a loss. For some background, I had very heavy painful periods from when they started age 13, I would spend a week off school in bed each month but thought it was normal. Only when this started inferring with college studies age 17 did I go to the GP about it. I was put on the mini pill as I have migraines but this didn't seem to help anything. At 19 I went back to the GP and asked for a gynaecology referral as my mum suffered similar and had endometriosis. After numerous trips to a and e with severe pain, last year I had an abdo and internal ultrasound which showed nothing and was advised to get the mirena coil done myself whilst I waited for my appointment. I went to a sexual health clinic and had this fitted last January and finally received an appointment in April- but they said I needed to have the coil in for 6 months minimum before I could have a laparoscopy. I have been waiting a year now for this appointment, despite my periods stopping and several GP appointments for pain relief I still have the exact same symptoms, and also have developed some new ones. I can't hold a full bladder anymore and have intense pain following peeing. I get the worst pain after sex and opening my bowels. I finally had some hope when I got an appointment through the post for this Friday, but now they have cancelled it and I feel back at square 1 all over again. I'm so sorry that was long and bless anyone who took the time to read that, I just needed to vent. I'm so thankful for this platform for letting me share. 💛 Love, Echo.

[Missy100]

Hi Echo,

You have definitely been suffering, and to be point blank it sucks. Ever since Covid I've also had numerous appts cancelled and rebooked (I'm still waiting for a follow up appt following the most recent internal ultrasound I had done in June for 'up to date and current results'. The first appt I received was in January, which the hospital cancelled and rebooked, and I've had numerous appts cancelled and rebooked since. The most recent was because my specialist endo consultant retired and they accidentally booked me an appt with him! The only appt I have had was a general gynacologist who telephoned me (rather than the endo specialist I was expecting) and they advised me they couldn't help and that I needed to go back on the endo team appt team list. Last week I was then advised by the appts team who called to rebook me that an endo consultant had looked at my file and decided I could be seen by a general gynae, and so told them to rebook me with a general gynae! Long story short, I do sympathise and understand the frustrations of feeling like maybe you are finally getting somewhere, only to experience further delays and disappointment — meanwhile with no relief from symptoms.

Sadly the battle to receive appropriate care is a long haul marathon (with Covid only making it worse), but please do not let anyone tell you your pain and/or symptoms are invalid. Chase up a new appointment, and don't be put off advocating for yourself (or having a family member/partner step in when you need support). You matter and you deserve to be treated as such.

Good luck 🍀

[Cailleach in reply to Missy100]

So sorry to hear all that you have gone through. Ultrasound often does not show endo unless done by a specially trained person. From the sound of your symptoms you have severe endometriosis. Can you get your GP to write back to the gynaecologist informing them of the severity of your symptoms and asking for a lap sooner rather than later. Unfortunately with the Covid backlog, waiting it’s seem to be longer than ever. You could consider a private consultation with an endo specialist, if you could afford it, It is also possible to get a specialist ultrasound or MRI scan done privately.

If you speak to your GP about your symptoms ask about improved pain relief, meds to delay urination and also Buscopan which can help with bowel cramping.

I do hope you get some help soon.