I'm 19 and ever since I was 14 I've been having excruciatingly painful periods. I was diagnosed with Polycystic Ovaries (not PCOS, just literally cysts on my ovaries - except apparently mine are in them??) when I was 15. A scan I had back in January only showed 3 cysts on each ovary though.
Anyway, to cut a long story short I've constantly been having trips to the doctors with this pain. The doctors just keep fobbing me off and telling me to just take painkillers but it is literally unbearable. Back in January I was admitted to a general hospital because of the pain but urine samples and blood tests came back fine. They treated it as a water infection and left me to it. However, during that time in hospital I lost all feeling in my right leg after having it completely throb and feel like someone was trying to tear my legs off of my body. Oromorph, tramadol, paracetamol and cocodamol done nothing.
Here's a list of my symptoms, just to see if anyone else thinks it's endo really, because I swear blind I have it but NOBODY will do anything!
- Leg pain, to the point I can't walk. Throbbing, cramping, pulling pain.
- Painful bowel movements (Can be sat on the toilet for 2 hours straight crying because it feels like *possibly too much information* my insides are about to fall out). Horrendous pulling pain.
- Lower abdomen pain
- Bleeding from back passage
- Very heavy periods
- Achy/fatigued, no energy whatsoever
- Starts about a week before my period is due, lasts for a week afterwards
- *Possibly too much information again* but the inside of my vagina feels really swollen. To the point where its agony to use a tampon and I have to revert back to sanitary towels which isn't enough on it's own to hold the flow.
- Painful pinching then popping feeling on right side of pelvis at the bottom of my back, It's there all the time it's just worse just before/during/a week after my period.
My GP even said to me the other day "well there's nothing else we can do, you've tried all the painkillers and nothing has worked so you'll just have to deal as best as you can."
No referral to Gynaecology even after 5 years of this excruciating pain which just gets worse with every period. I'm due to come on my period any day now and I've been in the worst pain I've ever been in prior to the arrival of my period, so going on the fact that when I actually get my period is a thousand times worse than it is prior to having it, I'm dreading this one even more so than I normally do.
My GP isn't helping and A&E didn't do anything in January either. They've ran no tests for Endo and I've had no referral to Gynaecology. I can't walk, I've been in bed for 5 days unable to move bent over in pain feeling nauseous and dizzy with it.
Any advice? Sorry for the long post... Could really do with some help right now.
I am really sorry that you have been through all of this. It is ridiculous that they haven't sent you to a gyno. Is there anyway you can push her to refer you to an Endo specialist? I can find one in your area if you let me know where you are.You sound like you are from somewhere in Europe, the UK perhaps?
Does your mother come with you to these appointments? I would have someone older come with you and MAKE them do the referral.
The only way to confirm Endo is through a lap surgery. I would advise that the first time you have surgery you get it done by the best endo excision specialist.
You sound like its very possible that you have Endo so I would not wait any longer and stop this GP from ignoring you. I have been there it took 14 yrs for me to be diagnosed and I pretty much diagnosed myself after going to 40+ doctors during that time. All missed the rectovaginall cysts which I was told was IBS.... So wrong. I too had the rectal and bowel pain and I was covered inside with Endo on the bowels and bladder. My insides were all fused together.
That is ridiculous and I know your pain and frustrations ALL too well! I was in and out of the hospital for a year undiagnosed and terrified. They even went as far to tell me that I was anorexic and that is why I was throwing up. My mom is actually the one who figured out that I could have endo. After going round and round with doctors I found an endo specialist and they agreed that just by my symptoms that had it. Switch doctors, do your research. There is going to be someone that will listen. Only you know what you feel, dont let them tell you different. Stay strong!
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