Has anyone else had the Frozen Pelvis operation? What are the effects of the Zoladex injections ?

So I thought I would write a blog not to share my experience but to ask for advice as I have searched the net high and low and even paid to join forums but I haven’t been able to find any stories what so ever on this topic. 

My next scheduled surgery it to de fuse my organs as I am now passed stage 4 Endo and I have been diagnosed with frozen pelvis disease. I am desperate to find out more about this procedure. 

From what I understand already from my previous gynaecologist my uterus, bowel, tubes and ovaries are fused together by Endometriosis, adhesions and scar tissues. 

All I know is I’m booked in for this surgery very soon before my bowel collapses but I would really like to learn more about it and speak to other women who have had this surgery which seems to be quite rare. 

Most of what I have found is told that it is a preparation surgery for a full Hysterectomy?

I am due to start my Zoladex injections (supposed to be last week but I’ve been putting it off) has anyone else had this ?? 

I understand the Zoladex injections are a hormone used to treat cancers such as breast cancer and  prostate cancer to prepare the lining of the uterus for surgery to correct abnormal bleeding. 

I am desprate to find women who have had this Frozen Pelvis operation and to hear their experience and advice. 

With your help to share this and raise awareness hopefully it will reach the right women to speak out and share their experiences. 

Thank you for your time in reading this blog, please get in touch of you have any advice you could give.

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7 thoughts on “Has anyone else had the Frozen Pelvis operation? What are the effects of the Zoladex injections ?

  1. Yes, me endommetriosis. Afther the operation I recovered bad !!! My bloodpressure was low and I got three bags blood. I was cut like a caeserian. I had no feeling anymore my body was empty and I have a lot of pain. Afther four months I start to working again but it feels no good. Six month later I crashed .The diagnosis was fibromyalgia and spasmophilia, chronic fatigue syndrome. Fortunately, I already had two children who I had been extremely sick for twice nine months. A few years later, I received a cyst and then a womb in the uterus. Another gynecologist took my uterus and cheated everything on my intestines. Now I have one ovary and was recovered fairly quickly from my surgery with holes. A suggestion does not wait too long with children if you want to. From my uterus away I feel much better. This hormonal horror I had from my twelve years Enough is enough. My chronic suspicion I have also since my childhood but I’m still alive and fifty years old. Success and Strength x

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    1. Thank you Kathleen, your journey is really inspiring. I’m so glad your feeling better since your uterus has been removed and luckily you have two children. I have my next appointment at London University Hospital June 29th so il see what my next steps are, I’m just starting to get sick or these constant surgeries because by the time I’ve recovered my from one surgery my Endo has returned and I’m having another surgery. It really is just draining but I can just hope and prey they find someone soon to keep it at bay. Xxx

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  2. I had surgery on 29th December to remove my ovary which had imbedded itself into my left side pelvic wall and the tube was completely squashed and restricted I had all adhesions removed and endo taken out. But unfortunately they couldn’t get to the endo on my bowel as they hadn’t realised it was there and has fused to my womb so more surgery needed to remove this and full hysterectomy is planned as my family is now thankfully complete. I was very lucky to conceive my daughter. Because I had her is why they missed the endo in the first place. I also have PCOS. Like you since I was 13 my cycle has been heavy, clotted, painful beyond belief. I was treated for IBS as they thought it was that. I managed to get a second opinion and they found all the endo and how much of my organs had fused together. 😦 I don’t have to have the zoladex as my ovary has been removed and the other one already isn’t coping so likely I’m going into menopause already. I was in surgery for five hours and felt really poorly afterwards from anethetic so make sure if you need to be sick, just be sick don’t hold in. And make sure you get plenty of rest. I’ve gone back to work way toearly and in lots of pain now 😦 but could not afford not to. It’s a marathon though, not a sprint. So take care. Your surgery will be fine. It’s a massive operation so don’t be hard on yourself afterwards xxxx

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  3. I had frozen pelvis syndrome from severe debilitating Endometriosis that I had suffered from for many years. I also suffered from PCOS (poly cystic ovarian syndrome) which exacerbated the issue exponentially. I also had so many fibroid tumours in my uterus it looked like a massive hedgehog! I was mis diagnosed for over 20 years. The doctor that finally found out what was going on was a world class surgeon and an Associate professor at some University or other called Dr Michael Wynn-Williams. He is New Zealand born and has done training in all parts of the world so I was very lucky to get to see him as one of his ‘public hospital’ patients which meant when he first operated on me to find out what was wrong by doing a laparoscopy, it was done for free. So was the operation that he did to ‘redact’ the endometrium tissue the first time. After my first surgery Dr Wynn-Williams said that I only had about an 11% chance of being able to fall pregnant due to the damage done to one fallopian tube was so bad it was useless and the other one was about 50% functional. I never did fall pregnant after that surgery (for many reasons I won’t go into here) and Dr did tell me that the endometrium tissue would return with a vengance. He was right. It would only be 5 years later and my entire pelvic cavity had been invaded so completely that I had crippling pain so bad for 4 days every month that I was prescribed both Endone and Oxycontin to help manage the pain. That was when I wasn’t being dragged off to hospital in the back of an ambulance. The ambo’s got so used to me that when they were called out to me they had morphine and the happy whistle ( one of those things you suck on that taste like crap but help dull the pain) ready for me. Apparently what was happening was whenever my ovaries developed a cyst it would rupture and as endometrium tissue had encapsulated both ovaries the fluid had no where to go so it formed a layer of scar tissue on the outside of the ovary until there was no space left and the scar tissue started to crush my ovaries. By the time I was scheduled to have a hysterectomy both my ovaries had been virtually crushed to death and were necrotic (left one was dead and the right one was still dying). The only reason why this didn’t cause some kind of sepsis in my system was because of the total encapsulation of both ovaries by endo tissue, which had become their own little coffins! The pain I suffered was so crippling I used to pray for death once a month every month. The pain was so bad that I would see blinding flashing lights going off in my eyes, then I would vomit (or dry retch once nothing was left in my tummy) and then pass out for about 20 seconds only to come too and have it all happen again, and again, and again……. etc etc etc. Dr Wynn-Williams gave me my life back. I had a total hysterectomy in 2012, it took him and his trainee Doc nearly 6 hours to ‘redact’ the tissue after they had removed my ovaries, fallopian tubes, uterus and cervix. There was a patch they couldn’t touch as it was the bit that glued my bowel to my uterus. He estimated about 2% was unable to be removed due to the risk of perforating my bowel and then needing a colostomy bag for the rest of my life. My bladder was so beat up during surgery that I had a Catheter in me for 11 days after surgery. It took that long for it to start functioning on it’s own again. However even though I had my entire set of reproductive organs removed and a few kilograms of endo tissue removed, I was up and walking the day after the surgery. Dr Wynn-Williams had done it all through keyhole and removed my uterus etc by going through the vagina and using a tool that ground up my innards and sucked them out in a big sausage like form. I have had not a single day of trouble since my surgery, Dr Wynn-Williams gave me my life back. No twinges of pain, no scar tissue or adhesions. The man is an artist and a genius. I can’t speak highly enough of him. A true miracle worker.

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