Hello all,
I’m new here and just after some advice because this world of endo feels a little overwhelming atm.
A little about me - I’m 27yo and have always suffered with v heavy painful periods and accepted it as ‘normal’. Was on mefenamic acid in my early teens, then got by on OTC painkillers. Tricycled the pill in my late teens/early 20s to ease the symptoms (not for contraceptive reasons as I’m a lesbian). My first smear aged 24 revealed a large cervical ectropian, which I needed a colposcopy for under GA.
In the last 12 months my periods have been even heavier, more irregular and more painful. I was ignoring it until late last year when I had two episodes of severe acute pain in my lower left abdomen, so bad it woke me up and I was in tears in absolute agony. Since then I’ve been getting this pain intermittently, bad enough to stop me in my tracks but not ongoing.
A trip to my GP in Dec resulted in being referred for an abdominal and transvaginal US in Jan. They expected to see an ovarian cyst because of the location of the pain but didn’t see anything. Had a GP apt with a lovely Dr who had a proper discussion about my symptoms and said it’s likely endo. She sent me for a smear and blood tests last week and I’m now awaiting a gynae referral from the GP to Homerton Hospital.
This week however I ended up in A+E because the pain was so bad again. I’d already had an exceptionally heavy and painful period last week and needed cocodamol to get by. On Monday I took a lower dose because I was at work and ended up needing to call 111.
I was seen by an emergency gynaecologist who examined me and also suggested endo, but that they’d admit me so I could have an US the next day and rule out an ovarian torsion. Fortunately this got ruled out and the sonographer was wonderful and took a lot of time examining me. They found evidence of adenomyosis in my uterus and also think there’s likely endo too because the pain is around my left ovary.
So now I’m also getting an NHS referral to a gynaecologist from A+E as well as my GP. Both drs mentioned that a laparoscopy would be the next step. My partner gets private healthcare through her work, so I contacted them last night to see if I can get anything through them. I’m particularly worried about any abdominal surgery as I’ve already got scars from an appendectomy and epigastric hernia repair and want to make sure I see someone who can minimise scarring and also get me out of this horrific pain.
The private healthcare have sent me options of private gynaecologists in my area (east London), but looking at them it seems like they mostly specialise in urogenital surgery, prolapses etc. I know from a friend with it how complex endo can be and want to get the best care. I have the option of choosing a consultant myself to see privately but I really don’t know where to start.
Does anybody have advice about consultants they’d recommend around London? There’s a BSGE NHS hospital in Whitechapel and the consultant does private practice at a hospital nearby, does this sound like the right route?
Thank you in advance for any advice! I’m just totally overwhelmed and don’t know where to begin.
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