Has anyone been diagnosed with stage 4 endometriosis and frozen pelvis. This is what I have, just looking for more info.

[Cat247]

I'm 7 days post lap and seeing the consultant on wednesday.

[WendyO]

Hi yes I too had a lap last Monday and have the same diagnosis plus my colon is fused waiting for an MRI scan. Came as a shock but as I have had lengthy painful periods for as long as I can remember on reading the symptoms I am now not surprised

[hayls]

Hi

Yes there are many women on this forum with the same diagnosis, so please don't feel alone, we share your pain, worries and concerns x I have recently had major surgery for extensive removal of stage 4 endo and to free up the organs in my pelvis, I had to have the work done across 2 ops as my bowel was more involved than they previously thought, I am now just over 6 weeks after the second op, I won't lie my recovery has been a struggle and I don't yet know how much of a benefit the surgery has been as my system hasnt kicked back in after prostap injections but at least I know I have had all surgery available to help. If you go down the surgery route its really important to make sure your surgeon is an actual endo specialist, more general gynaes are not experienced enough to treat it once it gets to the stage you're at. Hope your appointment goes well and your Gynae is able to help with a plan of action x

[Hidden in reply to hayls]

Hello Hayls

I hope you are well and recovered from your operations.

My ovaries are stuck to my uterus and my right ovary is also adhered to my bowel. Do I have a "frozen pelvis" or does this only relate to the bladder being involved too?

Unfortunately I also have Endo in my POD, on my uteral sacral ligaments and a ovarian cyst (which has been leaking). I also have adenomyosis and a fibroid.

I have completed my family and just wanted to hear about your experiences with your surgeries.

Kind regards,

Barbara x

[hayls in reply to Hidden]

Hi Barbara

Yes im recovering well from my ops now thanks, finally! Still a way off being 100% but managed to go back to work part time now and building up to full time gradually. To be honest, I'm not too sure what the specifics are for a "frozen pelvis" and some doctors mention it and others don't. Before my recent surgery my bowel, uterus and bladder were stuck together and both ovaries were clamped down on my pelvis, worst bit was a nodule of deep infiltrating endo in uteral ligament underneath one of the places where my bowel and uterus were stuck together and no one knew it was there until they unstuck my bowel as everything was so fused together. I already know my left ovary has restuck itself, this time to abdominal wall but not as uncomfortable as before, not yet anyway. The surgeon unstuck it in August, used anti-adhesion fluid etc but when he went back in October it was stuck on my left side, he freed it again and used 3 times as much anti-adhesion fluid but a scan 5 weeks later showed it was stuck again where it had fallen forward so stuck to abdominal wall. Its a disappointment but hardly surprising as it was stuck upside down for at least 10 years so I'm not surprised it doesn't want to go back to where its supposed to now and its closer to where it should be than it was before so that's something! So far everything seems to have gone to plan, only had 1 period so far so still in the wait and see stage but it was bliss compared to what it was like before! I used to struggle badly, and for a week after due to internal bleeding and inflammation but had no pain at all after this month and where I would end up on the bathroom floor before, this time it was more than manageable with just a hot water bottle for an hour! I doubt if will stay that way but I wasn't looking for miracles as want to be realistic, a 50% improvement in pain would be a success in my eyes but so far its been a lot better than that. I desperately want a baby so I didn't opt for the mirena or anything similar so fully know that the endo will most likely redevelop etc and I will need similar surgery again in the future but that's the risk im taking at the mo, but my surgeon reckoned it would be at least 5 years before things were as bad again. If I already had a family and was a bit older (30 now) I would have probably opted to have the same surgery plus either hysterectomy or ablation, to stop periods etc as well, as for me the biggest problem is the amount of internal bleeding i get each month. Good luck with whatever you decide, feel free to message me if you want to know anything else x

[Hidden in reply to hayls]

Thank you Hayls

Very informative. I too have a lot of internal bleeding and inflammation.

I also get do many chocolate cysts. They rupture, leak, get surgically removed or just disapear..,., but the right ovary always grows another bloomin cyst!

Maybe a hysterectomy or the GNRH drugs will be my next step.

I sincerely hope you soon have the baby you want and as a mother of 3 I can honestly say all the pain etc was well worth it to have them,

Thank you again

Barbara x

[Cat247]

Hi thanks guys. Yes my next surgeon is a specialist in endo which is good. I am having clear up op as other option was hysterectomy and i really want to at least try for another baby. My right ovary is very stuck and everything is fused together so i'm fully aware its going to be tough. WendyO i'm surprised they are doing an MRI after a lap, scans dont show endo so dont worry if it doesnt show anything. My MRI before my lap was clear but when they operated its a right old mess in there. Hayls i hope you recover soon it sounds like you've been through it. I am so glad now i have my gorgeous little boy who is 4 i just desperately hope i can have one more.xx

[Chrissie66 in reply to Cat247]

MRI does show endo up if it's been diagnosed, it just can't be used as a diagnostic tool I expect Wendy's doctors couldn't see what was going on with her colon because it was so messy in there with adhesions so the MRI will give them a clearer picture x

[Cat247]

Ahh i see. Thats interesting to know.x