post surgery pain worse!

[Mia843]

hi there,

i have always struggled with period pain since school around 2015, which has got progressively worse over time. After years of misdiagnosis and GPS turning me away, I was diagnosed with severstage 4 endo in April 2022 via laparoscopy. They removed all scar adhesions,drained two cysts (9cm and 8cm) unstuck my "kissing ovaries"flooded my tubes with dye (confirmed tubes ok) liver check (ok) .

since then every period has become worse.

i am in so much pain every month, I cannot go to work and my mental health has taken a huge hit. I'm depressed feeling faint and dizzy along with nausea. But it is the pain that is the worst!mainly located around uterus/ovaries lower abs area,but also down my upper legs, making walking unbareable. I spend roughly 3days a month in bed crying in pai and losing the will to live.

I have been referred back to the gynea in September 14th. Not sure what else they can do though and scared this is just going to get worse and worse.

Currently taking ibprofen and naproxen sometimes codine, but nothing is touching the sides. Ginger tea, tens machine [nothing is working)

i am against hormone treatments due to trying for a baby this year(so far unsuccessful)

Please help, i don't know what to do anymore.

[Bubble41]

I was diaognoised in February via laparoscopy, had my left ovary removed.

My pain has also increased since then.

I had the mirena coil fitted at the same which was meant to stop my periods. It slowed them, but not stopped them and the pain is so much worse.

The surgeon said he had to leave some of the tissue in my pouch of douglas as it was to dangerous to move.

I've been back and forth to the doctors, and my doctor thinks that it's that tissue causing all the pain.

Im going back to see the specialist in August. Fully expecting to be told more surgery is needed.

Sorry, I can't be much. But just to let you know your not alone. It's awful after pinning so much hope on things being better after surgery, only to find its not.

Hang in there. X

[Mia843 in reply to Bubble41]

Thanks so much for your reply,

I'm so sorry you are in a similar situation. Interesting, mine was also bad in the pouch of Douglas...

Just seems so overwhelming sometimes.

Good luck for August.

[BookBimbles]

I’m 6months post op from excision on the uterosacral ligament and poach of Douglas and now have more chronic pelvic pain and still can’t get back to normal as well as severe period pain. I’m also not on hormones but codeine (prescription strength). And tried dietary changes (helped with pms / gastro more than anything).

I’m also waiting for gynae follow up. The emotional low from pain is awful. It’s helpful to know we’re not alone. From reading and discussion with a pelvic physiotherapist (I have eventually seen privately) surgery without pre- and post- pelvic physio has worsened pelvic muscle disorder that I didn’t know I had. This causes pain in itself as well as what I suspect might be scarring / adhesions or even a hernia from gas pressure - who knows until medical looked at. Womens Health didn’t mention pelvic muscle disorder until I did, after surgery. I’m now still on a waitlist for NHS pelvic physio, Gastroenterology (IBS symptoms/pain - also not going to help pelvic muscle disorder). I have an NHS Pain clinic appt next month but also a private one next week (but that includes the option of medical cannabis, so no good if you’re trying to get pregnant). I have just ordered a Thermie - electronic massage / hot water belt to try as well as TENS. And just came across this course online for pelvic pain, which looks like it might be helpful - but not done it and thought Id ask my physio’s opinion- mariaelliottphysiotherapyse...

I’ve been using Amy Stein’s book Heal Pelvic Pain to broaden my understanding with physio stretches, as there’s helpful explanations of self massage, stretching etc you can do.

Hang in there and try enjoy some fun things when you can

X