Suspicion of endometriosis

[Test21]

Hi,

I have suffered from pain on my left side for years starting in the ovaries region. It has now expanded all the way down my left leg, left back, ribs, lower left buttock, now it is going up my neck and shoulder. Sometimes it is like something is pulling my left side (ovaries area) from within.

Since I am a kid I had severe periods. While aging I stopped the pill and started having severe pain also half way through my cycle. Sometimes it was like a knife through my anus and I was constipated.

I have been taking hormones for a few months which at first helped but the pain continues to expand in my buttock and neck for the last 3 months.

I saw 2 gynaecologists once said you have endometriosis the other said I don’t think so. I am currently on the waiting list for an endometriosis centre.

Does any of you recognise some of the symptoms? I have this for years now and I am in such pain.

Thanks.

[SW91]

I had similar symptoms and was also told by different consultants different things. The fact is, they can not diagnose Endo until they do a laparoscopy so I would push for that if I were you.

It is so difficult when you know in yourself it is not right and then you feel like you are not being listened too. I have only just had laparoscopy and been diagnosed with Endo after years of pain. Keep going and asking for further tests!! Good luck x

[Test21 in reply to SW91]

Thanks a lot I will push for it. I am so glad to find people have the same symptoms as me and are now feeling better. It feels me with confidence that it can go better.

[Lindylou73]

I can relate to all of the above! I’m 44 with2 grown up children! Following appendectomy adhesions caused a ruptured bowel and subsequent laparotomy! I then had a 10cm hydrasalphinx removed from left tube. During this laparoscopy they identified my bowel stuck to my abdominal wall and belly button anchored into it so couldn’t free up keyhole! For over a year I’ve had a right ovarian cyst 8cm at diagnosis decreasing then back to 8!!! Now classified as an endometrioma (so I suspect must have endometriosis too) Feel bloated periods and ovulation are uncomfortable and draining! Pulling and cramping when walking and certainly when doing sport! Gynae taking watch and observe approach as surgery would be open and complicated due to adhesions and issues!!!! What pain relief does everyone use I’ve been taking naproxen but find it makes me drowsy?

[Test21 in reply to Lindylou73]

Sorry to hear all the stories. It feels good to know we are not alone even if it is difficult for all of us.

[Lindylou73]

You know when things aren’t right! Luckily a locum go took my first mention of it seriously and I was scanned within 1.5 weeks!!!! Had 3 scans and 2 hospital appointments so I feel I’ve recieved good care. After 1 year of escalated symptoms it can be uncomfortable especially at night or standing for long periods! Does anyone else find stress makes it worse? I’m worried about taking time off work and have an occupational health referral for the condition as I can’t wear my protective equipment and belt for frontline work! Do endometriomas keep getting larger or can they shrink/stabilise?

[Char411 in reply to Lindylou73]

Lindylou73 stress is one of my biggest triggers. Can cause a flare up that lasts weeks. Test21 my pain is left sided and has escalated down my left leg and sometimes up my ribs. I am waiting for a lap. It’s so frustrating and makes you feel so isolated at times. It’s nice to know we aren’t alone.

[Test21 in reply to Char411]

Exactly the same. Diagnosis is the first step

[Lindylou73]

Where is the endometriosis centre?

[Test21 in reply to Lindylou73]

In the Netherlands

[Helenababs]

Sounds like what I have been going through...painful periods when I was younger....went on the pill and they eased....came off the pill to try for a baby and periods were horrendous.....i have stage 4 endermetreeosis...issues with my kidney and bowel. ..constipated.... but understand the pain ....even the shooting pains to the anus.....not fun x

[Test21 in reply to Helenababs]

Thanks for sharing your experience it is really appreciated

[Amorgatory]

I feel you guys. Been suffering from painful periods ever since college and i just diagnose this year of endometriosis. Had laparoscopy and hysteroscopy a week ago and now taking time healing. And im back to my gyne tomorrow a bit nerve breaking cause she was saying to me i might undergo another surgery she found fibroids in parts of my pelvis and a rectal nodule which scares me . So ill find out tomorrow the plan.

[Test21 in reply to Amorgatory]

I hope all goes well best of luck with the next step

[JOSANDY40]

Well from my own experience. Nerve in the back buttock sends pain across back, bowel, leg, groin up back. Once it get inflammation it carries on for months. It effected my walking, sometimes would stop me straightening up or the pain would stop the signal to my left leg all together and I couldn't feel my left so I couldn't walk. Since my scare, nerve damage, adhesions with ridged bowel. I can't walk very far. Uneven surfaces bring the pain on cos it rocks the pelvis. I can sit in a jazzius but can't have the jets on me. Cycling is out, no running and equally walk to slow and standing in one position is impossible. If I vacuum a room , it's little by little with breaks of 19 mins so I can achieve things without starting the pain up.

[Amorgatory]

I am now on Synarel nasal spray. And the doctor is not concern abiut the nodul since its not affecting my bowels well just keep an eye on it, which is good as i am not ready for any surgery yet.

[kika006]

Hi Test21,

I'm curious about your case. Did they discover you endometriosis? Have you done laparoscopy? I have similar symptoms and would like to know how are you doing. Hope you will answer me.