Endo and vaginal pain

[Hannah818]

Is it normal to have vaginal pain with a endometria cyst on ovary? Recently found out I have this endometria, have had pelvic issues for nearly two years and repeated hospitalisation and pain. Now started with new pain in vagina its a dull constant , sometimes more after bowel movement or going to loo, hard to find comfortable position to sit when it starts up.

Don't know if it's nerve related, adhesions/scarring or endo related or all! Been GP twice, she said I don't need MRI because surgery to remove endometria will look inside and find what it is. I'm on surgery wait list, been told it might be Dec or Jan. Gp also said 'endometriosis is not serious, don't worry, it's not cancer' (!)

Gave me urine infection antibiotics , I know it's not that. Have had multiple repeated urine tests which show nothing . Recent hospitalisation was due to inflammation in pelvic area and acute pain . So mixed up about everything. I'm under a BSGE site but have had no information from them about endometriosis, except being told have endometria. Just told by discharge nurse to manage pain with paracetamol and suppositories when needed whilst on surgery list.

[Mel5523]

Hi hannah, I have a cyst on my vaginal wall, very painful, constant ache, also have been diagnosed with adenomyosis. My gynaecologist has referred me to a urologist and am now waiting for mri results. My advice to you is insist on a full explanation, can I ask where you are being seen?

[Hannah818 in reply to Mel5523]

In North West of England, thank you for your reply, I'd like gynaecology to refer me to bowel or urologist but not been able to get in touch

[Lilac_10]

Hi Hannah,

I’m sorry to hear you’ve developed a new pain, but pleased your surgery is soon. I have rectovaginal endometriosis - I also have adenomyosis and had surgery to remove endo in other areas of my abdomen/pelvis earlier in the year. Although my vaginal pain isn’t constant, I can get an aching pain in my vagina after bowel movements. I have to take daily Laxido to pass a bowel movement but if I don’t take them that’s when I get the aching. I also get it randomly or as part of my period pains. I’ve never asked about it, but I presumed it was all connected to my endometriosis/adenomyosis.

It’s worth asking about your new symptom when you get the chance as sometimes the not knowing can understandably be frustrating and put your brain into overdrive (I know it does me).

I was actually talking with someone the other day explaining that, like you, I didn’t actually receive any information on endometriosis when diagnosed, not even a leaflet, I just did lots of research myself. It’s definitely something that could improve. Even if they signposted us to particular sites like the Endometriosis Foundation for information.

I hope your upcoming surgery and recovery goes well. Take care x

[Mhol752]

I have endometriosis and get inconsistent pain in my vagina, sometimes dull and sometimes sharp shooting pains as though my body is trying to push something out. I’ve had a few ovarian cysts too. Nothing fully gets rid of the pain when it comes but I find putting a hot water bottle on it sometimes eases the pain! Hopefully they get you in for surgery as soon as possible, best wishes x

[DrKatie]

Hi Hannah,

I would like a stern word with your doctor. It may not be cancer, but it has an enormous detrimental effect on your quality of life.

The pain could be pelvic floor hypertonicity, I had that after my hysterectomy (for adenomyosis). Regardless, you should push for a referral to a gynae (try to find a hospital with an endo specialist). No pain is 'normal'.

Wishing you the best of luck. After years of appalling treatment I'm in the process of writing a book about women's health to empower patients and educate medics.

Best wishes,

Katie

[Hannah818 in reply to DrKatie]

Thank you Katie, after three repeat visits GP has asked for gynae for referral , waiting to hear back Pain is now also in upper leg near rear

It's so unpredictable

Sorry to hear you also had appalling treatment for long time

[DrKatie in reply to Hannah818]

Yes, I've had that too. All of the muscles are connected and go through the same space in your pelvis. It can also cause sciatica for the same reason. I really hope you can get the right help soon.