Severe pain but clear ultrasound?

[Squirrel1991]

Hi all, I was diagnosed with Endo via laparoscopy in 2018. Since then I've struggled to get care/treatment on the NHS so mostly self managing.

A couple of weeks ago I woke up with a different, severe type of pelvic pain, so bad I thought it might be something different. Ended up in a&e - doctors suspected appendicitis or burst ovarian cyst, but when blood test and gynae ultrasound came back clear they said nothing to worry about and sent me home. Since then I've had more severe pain flares in different parts of the pelvis which last several hours and stop me doing anything. Naproxen doesn't work.

Just wondering if anyone has had similar? Did it turn out to be Endo and is there anything that helped?

[Jenova]

Hello. I had such pains before operations and before hormone therapy. The pains were in the area of ​​the sigmoid colon, then the pain rose higher under the ribs and looked like pain with stomach problems. Nothing helped me, usually I took a large dose of painkillers. Did your doctors prescribe hormone therapy for you?

[Squirrel1991 in reply to Jenova]

Thanks so much for sharing your experience. I've been taking the combined oral contraceptive pill to try and manage symptoms but things still seem to be getting worse. May I ask which hormone therapy you tried, and if you also had normal ultrasound scan results?

[Jenova in reply to Squirrel1991]

After the first surgery, I took "Visanne" (dienogest 2 mg) for six months at the appointment of a doctor without a break. The drug did not fit me because I felt all the side effects (alopecia, shortness of breath, tachycardia, sleep disturbance, stomach problems, acne, suicidal thoughts, etc.) then my doctor canceled this drug and I began to prepare for the second surgery. After the second surgery and now I take "Duphaston" (dydrogesterone 20mg). My body takes it better. The pain's gone completely, but... recently I did a control ultrasound and they found 2 foci on the sigmoid intestine (bladder and ovaries are clean now). One of the foci damaged the wall of the intestine. Honestly, I'm scared. If you have the opportunity you need to constantly keep your illness under control otherwise things can get worse. My endometriosis was discovered too late. For a long time, all my ultrasounds were good and I did not know that I was sick, I was just in pain, but 3 years ago I had cysts in my ovaries and had to do surgery. When the surgeons cut me, they saw that the entire abdominal cavity contains endometrioid foci. They were on the intestines, ligaments, ureters, bladder... surgeons didn't expect it. Maybe you should do a magnetic tomography (MRI) scan, it's more informative. But you need a good doctor who can "read"the pictures correctly.

[Escapologygirl]

Hi

Im sorry to hear that but if it helps I'm in Ireland and exactly the same. Diagnosed same time as you too. Can't get anyone do a surgery here , been fobbed off with decapeptyl injections and the mini pill neither of which suited me as I had every side effects and I lost most of last year to it including a family wedding.

I'm actually being treated privately as there's like a decade long waiting list for public health service over here. I wish you luck.

[Tillyfloss]

Hi. How are you feeling? I had sudden intense pain usually around my ovaries numerous times over the years and getting help is very difficult as it always seems to be it’s monthly pain and I must have a low pain threshold. It actually turned out to be stage 4 deep infiltrated endometriosis and these intense stages of pain were ruptured cysts, my scans always came back clear until the last time they decided the cyst was not a simple fluid cyst but a chocolate cyst when I eventually got emergency surgery and some answers. Keep going back as they shouldn’t be leaving you in pain and you definitely know your own body. Other things that might help is the endometriosis diet and asking for a referral to the pain clinic to see if they can help. Xx