FROZEN Pelvis- what to do next??

[Minchoo]

Hi

I have a strange case:

2015: no endo but fibroids confirmed through lap

2015 Summer: Fibriod removal via myomectomy

2015-2016: Clear - suspected blood cyst on right ovary

2018: (2 rounds IVF- both failed) - second cycle resulted in PID

operation due to PID - one tube removed, one tube clipped one side only (not sure why!!) one cyst drained.

One ovarian cyst still there (potentially) - also now confirmed is a Frozen pelvis.

Now I know my case is extreme - but I am recovering and will be discussing my case with specialists.

I have no idea if I have Endo, apparently it wasn’t seen

By any chance is there anyone out there with a Frozen pelvis? What did you do?

I am 35, no kids. Would appreciate your stories / feedback - thank you

[WeeJacs]

Hey M

Sounds similar to me tho it was my left side that was frozen. Your cysts can be as a result of Endo at least that's what my consultant advised me. During my 2nd lap he removed a cyst from my right ovary and managed to mobilise my left side which was all fused together. I've had 2 mc from ivf and just seen a private clinic who has informed me that my Endo is prob the reason for poor egg quality. I find it strange you have never been diagnose xx

[Minchoo in reply to WeeJacs]

Hi lovely thanks for your reply - I am not sure if my endo was hiding in my Frozen pelvis, but it wasn’t seen at all. But I have also heard you can get frozen organs from surgeries. So, I am starting to think I don’t have Endo? My AMH is also low. One cyst burst and was drained. The FP was also cut on the left, again no endo. Right side clipped on bottom. But not on top, as the clip had broken... not sure why more effort wasn’t obtained to get a new clip.

Glad to hear your better? What’s your next steps xx

[WeeJacs in reply to Minchoo]

My AMH was 13.8 5 years ago, after 2 laps it's now 6 so I've been advised no further surgery. Consultant said the cysts can also have an effect on the AMH. I'm 37 but it's still classed as in the lower side for my age. I'm defo better after the Endo removal. I am now taking Micronized DHEA for the next 3 months to hopefully increase my egg quality. This was recommended by the consultant then trying again x

[Minchoo in reply to WeeJacs]

Wishing you lots of baby dust. I have an appointment to discuss my issues with a BGSE specialist and see what’s happening. It might not be endo with me, but just adhesions and frozen pelvis. God knows. I would prefer not to have further surgeries. Try for a baby and then get a hysterectomy and get the mess out. 🤷🏼‍♀️ but let’s see what happens.

wishing you lots of luck, eat right and get some exercise in too.

Going to get my exercise in soon as soon as I am fit enough xx

[Tillyfloss]

hi. How is your recover going? You have really been through so be kind to yourself.

do you have a lot of pain with your frozen pelvis and what type of surgeon has told you that you don't have endometriosis?

I had a full frozen pelvis, it was one of the worst cases my bsge specialist had seen and he didn't know how the general gynecologist who did emergency surgery on me 6 months earlier had missed it.

I hope you find the specialist helpful, mine was amazing and I finally felt I was being listened to.

my operation was for endometriosis and cyst removal we didn't know about the frozen pelvis until the specialist started the operation and my 2 hour straight forward op turned into a 6 hour operation which he described as tremendously difficult just to free up my pelvis. Despite the shock and the extent of the surgery they did I felt so much better and 12 months is still do. They had to leave some as it was gone 8 pm by the time they got to a point they could safely stop and for the time being we have no further surgery planned. We had planned on going down the ivf route ourselves this year but unfortunately my husband is poorly so it's on hold.

get the best pain plan in place you can and go with symptoms / time line of what has been happening which the specialist we saw found very helpful.

you have one half the battle by knowing it's there you just need the right treatment 😊.

good luck. Xx

[Minchoo in reply to Tillyfloss]

Thanks Tillyfloss, well he didn’t see any endometriosis, but my pelvis is frozen. Not sure if it’s hiding. Before the operation I had developed PID due to IVF cycle. I didn’t have any pain symptoms before that. But after second cycle had pains on my right side. At the moment I am strongly medicated will see how I feel in a few weeks. Going to see a specialist in July. Hopefully will have more answers then. Then determine if we want to do more IVF or just DE.

Glad to know your better. I am so scared of further surgeries. I had 3 so far. Just worried it’s causing excessive adhesions.

How many have you had?

[Tillyfloss]

hi. Was it a general gynecologist doing your surgery? Mine is stage 4 deep infiltrated endometriosis apparently and the general gynecologist only saw the odd patch, the specialist said it's unfortunately very common its missed ☹ .

what meds are you taking? I hope they help. Have you tried diet changes? Gluten / wheat are just a no go for me I am in agony even after my last

surgery.

what's de?

I had an emergency c-section in 2011. In September 16 I was taken into hospital with suspected appendicitis, it turned out I had a 6cm chocolate cyst that was slow ruptured and my pelvis cavity was submerged in blood ( hence why my appendicitis was very unhappy) I got sepsis and had various issues. We saw a bsge specialist and he was brilliant, MRI scan was good so he got me as the cyst had refilled and when he got in there it was awful, took 90 minutes to find my uterus. He was brilliant going ahead with the surgery anyway and said he couldn't understand how I had coped with that level, nothing could move like its supposed to. They couldn't tackle it all and I have deep endometriosis on my bowel which they have decided for the time being they will leave as I'm not in pain if I watch what I eat and i have a nodule and bladder Endo but not as badly as my bowel. I'm lucky to have amazing support which has got me through it all.

xx

[Minchoo in reply to Tillyfloss]

Wow that’s a lot to deal with, I hope you are ok, my heart goes out to you. This disease is awful!!

He couldn’t find it at all. But there are mentions of endometriomas on my report but then he said my left cyst burst during the operation. So god knows! Yeah he was a general Gyane with a interest in fertility.

I am going Gluten free now and have become a pesterian since a year.

What a horrible disease this is. You poor chick. I don’t know the full story of my issue. It’s annoying me as I wish someone sat down and told me what’s what. At least you know. Which I think at allows you a course of action and treatment.

I hope your pain subsides and you feel better.

The doctor did say many people walk around with Frozen pelvis’ living normal lives and if men undergo surgery- they too can get it via adhesions.

DE is donor eggs. As you know no babies yet, would be happy with one! And then would like to definitely adopt no matter what happens.