New here, first post.: I have mrkh. I have... - Endometriosis UK

Endometriosis UK
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andie68
andie68

I have mrkh. I have a womb and ovaries but no cervix. I have severe deep intra abdominal endometriosis, all my organs are fused together with adhesions, my ovaries are stuck to my pelvis which are putting pressure on my kidneys causing intense back pain. Mine is a very long story starting when I was 14 when I should have started my periods leading right up to 2010 when I had to have 10.4 litres of ascites drained from my abdomen then over the next 2 years I had a total of 27 litres of menstrual fluid/ascites drained. I had to have 3 blood transfusions in 2010. I'm currently on Zoladex to stop my internal periods and will be kept on this till I'm 50, I'm 46 now, then it'll be withdrawn to see how my body copes. The medical professionals seem at a loss what to do to help me they call me 'unique' as they've never treat anyone with this before, I know that surgery is out of the question because everything in my abdomen is fused together with fibrous adhesions so surgery would be too dangerous.. I often feel like I haven't anyone to talk to because its quite a rare thing to have. I have crippling back pain every day, I take Tramadol but that doesn't even take the edge off it 

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Sending you cyber hugs! I'm so sorry to hear what you are going through. You mention that surgery would be too dangerous but have you considered surgery by someone who specialises in complex endo cases? I am having a different type of endo removal surgery in a few months, its called 'total pelvic peritoneal excision' surgery. My particular surgeon has successfully performed this procedure on many women with very serious and complex endo, scarring and adhesions etc where everything in the pelvic area was stuck together and other doctors had told them they would not operate or there was no hope. Just a thought, and I do appreciate that not everyone wants to go down the surgical route as there are no guarantees. Have you considered physiotherapy for the back pain? I take tramadol too and like you say it doesn't always take the edge off the pain. Have you maybe considered taking tramadol in combination with other medicines for better effect? Take care of yourself hun xx

Thanks Seaside :-) I was on quite a high dose of codeine for a while but I was having really bad stomach cramps along with vomiting quite regularly and constipation (which made endo pain worse). My gp changed my painkillers to Tramadol and the vomiting stopped but nothing really takes the pain away long enough to give me any comfort :-(

I did ask my consultant about surgery and he said they wouldn't even consider it, which scared me a bit. I'm not sure if there are any specialist endo surgeons here, if so then I would hope that my consultant would have referred me. For the past three years they've used the 'watch and wait'. The ascites hasn't accumulated anymore since April 2012 so I guess the Zoladex is doing something, but I'm not allowed any HRT as they don't want to stimulate the endo which may cause bleeding and as I don't have a cervix it will just stay in my abdomen causing clots etc. Anyway one good thing thats come out of all of this is I've learnt to appreciate life more, I take time now to stop and smell the flowers and just take a look around me :-)

LeyaC
LeyaC in reply to andie68

Whereabouts do you live? If you don't mind me asking, I might be able to find someone who could operate on you xx

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LeyaC
LeyaC in reply to Hidden

Pm sent to you as you cant recommend publicly xxx

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I am sending you hugs, I completely understand. After many years suffering with polycystic overlies and other women issues, I had finally found a doctor that would do a complete hysterectomy. I had all the ultrasounds and test. Got to hospital thinking finally these painful issues would be gone. They took me into operating room and when I woke up I had my incision, dressings and everything. I called my husband to tell him it was over and I was OK. I had seen plenty of nurses and the next morning the doctor came in and asked if anyone had talked to me about what happened. I said no but there surgery was a success as far as I knew, I was sore and hurting but I had expected that. Next thing I know is the doctor telling me they opened me up, had a good look around and sewed me back up. I was speechless and in tears, asking why? I was told I had a "frozen" pelvis that was severe and no doctor is willing or able to do anything. He said in his 30 years he had never seen one as bad as mine so only option left was the coil to help with bleeding but not with pain. I have had a few surgeries including etopic pregnancy, tummy tuck (after loosing 13 stone) as well as a few d&c due to 6 miscarriages. All the scar tissue has glued all my bits into one "glob" of tissue that can't be separated so I am stuck with the pain so I can understand the pain, anger, fusteration and feeling helpless. I hope they will find a solution for your situation and will be thinking of you. Take care

This is going to sound like a really glib suggestion, but have you given the endo diet a really good go? I have tried for about 3 months now and am starting to feel the benefits and identify when I'm eating stuff that's not good for me and my endo (my puch of Douglas is an excellent barometer.

HirsGizzard can you tell me where I can find details of the endo diet? I am willing to try almost anything. I've just had a horrible weekend of vomiting and horrendous cramps, I'm at the point where I'm scared to eat in case it upsets my stomach :-(

Hidden
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I had severe deep abdominal endo. There are some areas that the surgeon could not remove due to the position. The doctors who i have seen recently believe that this is causing the recent issues. I dont know what else to say but i hope you receive a resolution. Best wishes for you.:)

I'm sorry to hear this..Treatment for MRKH depends on the individual patient and their symptoms. If the vagina is also missing, ladies are more likely to choose to have a vagina created through: 1. Vaginal dilators – a small round tube similar to a tampon, called a dilator, is pressed against the area where the vagina should be on a daily basis to stretch the vaginal canal to a normal length. Progressively larger dilators are used as the area stretches. 2. Reconstructive surgery to create a vagina. To try for a baby, ladies often turn to ART or surrogacy as they're still able to produce healthy eggs but have no ability to carry a baby on their own. My friend says those give her hope adding strength and confidence. Thus she has to use mitochondrial donation too in order to ''rejuvenate'' her eggs for the IVF procedure & further surrogacy. I want to believe things have got much better for you now in a time flow.

andie68
andie68 in reply to Karinyaa

Gosh I can't believe it's been 6 years since I wrote that post. Since my first post I found out the cause of my vomiting was due to my bowel being blocked, I was having sub acute bowel blockages, I've since been in the care of a lovely bowel consultant at Newcastle but still only on a watch type basis, he can't operate because of the severe adhesions, it would be too dangerous. I've also found out that I have fluid accumulated around my right lung, I was referred to a consultant and they tried to remove the fluid (one of the most painful things I've had done 😩) but they only managed to get a syringe full of what looked like thick yellow custard! When they had the syringe into my back trying to get the fluid out it hurt so bad, I felt all my insides were trying to be sucked out as they were drawing the fluid out. Not a nice experience. Anyway I'm now living with about a litre of yellow gooey fluid around my right lung. It won't budge. I was taken off the Zoladex last year after nearly 9 years on it because I was starting to develop other health problems because of it, high blood pressure, high blood sugar, high cholesterol. I now feel like a new person since stopping Zoladex, I still have all the health issues but I'm a calmer person now, happier in myself. I didn't realise the snappy, angry person I'd become until about 3 months after stopping Zoladex, my brain fog disappeared and I'm generally in a good place. My Gynae consultant is sure I'm in natural menopause now so hopefully there will be no reccurance of ascites. I have to be careful not to overdo things, I exercise regularly but I know what I can and can't do and when to stop. I have times when if I twist or move suddenly my insides get knotted up and I can't move, it's the adhesions sticking together, it's painful but I don't find it as scary as I first did, it usually passes after a few minutes.

Anyway, thank you all for taking the time to read this and my other posts, ten years since I started this journey have gone by so quickly, although it didn't feel like it at the time when I was spending so much time in hospital, but right at the beginning I told myself this is something I'm going to have to go through, it's going to be a long haul so I will look at it as an adventure and not be negative, I'm an optimist and it helped me a great deal to get through this.🙂

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