If not Endo, what? TW
I had a laparoscopy in December 2025 after waiting 3 years on the NHS. I was so desperate to find out what was going on internally that I just accepted the surgery date with a General Surgeon (Not gynaecology Surgeon or Endo Specialist, I actually despair looking back, I cry most nights for being this stupid) and they found nothing. They removed a 15x12 cyst and that was it. I didn’t get any follow up or anything, just a quick chat post surgery and I haven’t heard from my Gynaecologist since aside from a courtesy message about a month after asking about how I’m getting on with recovery etc.
I’ve actually gotten worse since the procedure. My symptoms are as follows.
- Constant pelvic pain and cramping, dull continuous, zero break from it, varies from dull and there in the background to absolute agony, can’t walk or move, spreads to my back, groin and legs and hips.
- Relentless nausea, I’ve lost so much weight I’m now underweight. Zero pleasure in food anymore, everything tastes either horrendous or not worth the bloating after.
- Constant bloating, barely fit in any of my pants anymore. Often mistook for pregnant.
- Can’t have sex at all, will bleed for weeks on end after.
- Bladder pain, dull and achey. Not constant but continuous if I’m actively on my period.
- Rectal pain, bleed constantly from here also, blood in my stools on my period without fail. Severe constipation when I’m bleeding, 7/10 of the time I have to manually remove my stool otherwise I genuinely cannot go.
- Seriously long periods. I’ve been on my current period for 20 days. Full fresh bleed btw.
- Heavy huge clots and also sometimes disgusting chunks of tissue. Sometimes I wipe and it legitimately looks like flesh, it’s often grey and sometimes hard and firm.
- Extreme fatigue. It’s gotten so bad they thought I had Narcolepsy. Turns out I don’t but I’ve been diagnosed with Idiopathic Hypersomnia. Can’t work full time due to this. When I’m actively on my period I can regularly sleep for 14/15 hours, fall asleep at my desk, during the day etc.
- Depression/Anxiety. I suffered from it since I started my period which I understand sorta, low mood is somewhat normal I suppose but since it’s ramped up I just cannot do anything. Everything causes me pain, stress, worry or embarrassment.
I don’t know what to do anymore. They diagnosed me with IBS early on in this journey before they connected the gynaecology symptoms which I understand but they’ve tested me for a plethora of things and seem adamant it’s not Endometriosis however they never confirm what they actually think it is. I’ve done a smear, done a transvaginal ultrasound, the laparoscopy in December, a colonoscopy (both regular and with contrast), a pill endoscopy to check it’s not related to my transit time. They’ve checked for helibacter, gastritis, chrons, they even did a full STD panel and pregnancy test. I’ve done countless blood tests, they’ve checked for coeliac but everything comes back normal.
Where am I supposed to go next? They shout at me every time I suggest they may have missed it and accuse me of wanting Endometriosis and when I’ve raised the possibility of Adenomyosis they say unlikely without Endometriosis.
It’s ruining my life in ways I’m genuinely struggling to cope with for much longer. I’m under the crisis team at my GP due to how depressed I am as a result of my health and not being able to work but I genuinely don’t know how much longer I can cope with the symptoms. I’ve asked if they can do a hysterectomy but they’ve said no, I’m too young (I turned 28 in December).
I’m at my wits end. What more can I possibly ask them to do? I’m in the UK. South East England to be specific.