My Story...Part two.

Continued from part one (blog below)..........


I stopped Zolodex in Dec 06. In Nov 07 I made the decision to have excision surgery to take away a nodule in my pouch of Douglas, split my womb from my bowel, clear up my left ovary and take adhesions away. A month after that surgery I came across the books ‘A headache in the pelvis’  written by David Wise and the trigger point manual by Clair Davies . I did a lot of research on trigger point therapy and found out how this was helping a lot of people in the states overcome their pelvic/vulva pain.  

There is a lot of information out there on Endometriosis and Pelvic Floor Dysfunction and the role that endometriosis plays in this. I did some research to find somebody based in London trained in Trigger point therapy and this brought me to Brent Osborn-Smith (Osteopath & Acupuncturist) www.clickaback.com. 

I went to see Brent in March 08 and he treated me for external and internal trigger points. He found that my coccyx was out of place and I had many trigger points both externally and internally. The treatment is painful but I found it settled down a few days later, I was doing well then I would get my period and it would be agony, then after my period stopped I would feel like all of my nerves had been switched on and would hurt. I would then go and have a session with Brent and again it would be painful but settle down again a few days later and then the cycle would begin again.

I started taking Yasmin in September 08 to stop my periods so I could continue with having trigger point therapy without periods but the Yasmin had the opposite effect and made me bleed nearly continuously for 5 months which made life incredibly difficult and I was unable to go and have any treatment.

Just over one year later,in January 09 I had more surgery to remove another nodule from my pouch of douglas, same place as last time, clean up my left ovary again and my right ovary and remove some endo deposits from my rectum, I had a mirena coil fitted at this time.I bled nearly continuously again. I was in pain all of the time. It was just the degree of pain that went up and down. It made my life unbearable!

In May 09 I went to see Mr Kent – Endometriosis specialist at The Royal Surrey, he took out the mirena coil. He sent me for a trans-vaginal scan, an MRI and referred me to Dr Dow – Pain Consultant. Dr Dow suggested taking Lyrica (Pregablin) which I was very against due to my earlier experience of amitripyline. I started taking the Lyrica in Sep 09 and pushed it up to 300mg a day. This didn’t do much for the pain but did help me sleep which made my days easier.

In April 10 Mr Kent and Prof Rockal (Bowel surgeon) performed a joint bowel re-section, Mr Kent also had to take a small section of the wall of my vagina, my left ovary was involved and my left side needed a clean up. It is now 19 months since the surgery and there is no difference in pain during periods. This type of surgery does help a lot of people but sadly it hasn't helped me. I am still happy that I opted for this surgery as at least the Endo that was there has been cut out so less likely to grow back.

I have lost a lot of everyday fitness after the last few years of just getting through life in pain and then laying on the sofa or in bed and specifically after my last surgery. Every time I start getting on my feet I have a period and it knocks me off my feet for a week or so then I spend the next couple of weeks trying to get back on my feet before the cycle starts again.

In Oct 10 I tried Trimovate for  fissues and  I started using lidocaine on a cotton wool ball continuously for 3 months in the vestibule area on the advice of Wendy Reid. This seemed to be numbing the area nicely until I had flair up of pain after a sigmoidoscopy and now I have become sensitive to the lidocaine.

I have seen Maria Elliott (pelvic pain physiotherapist) since June 2011 http://www.simplywomenshealth.co.uk/ . She has been treating me for connective tissue problems and lengthening the tight short muscles around the pelvis. She has taught my partner to skin roll so I can have this done 3 times a week when possible at home. I now have the confidence to touch my tummy which I didn't have before seeing Maria due to the pain.

Since Jan 11 I have been doing the yoga series in Isa Herera’s book to stretch out my pelvic muscles and being aware and thinking about dropping my pelvic floor muscles using my in breathe.

I have most recently been to see Natasha Curran, Pain specialist at UCLH (I'll blog about this in more detail) http://www.uclh.org/Pages/home.aspx. There is no magic cure for me to end the pain but I have been referred to their physiotherapy department that work with you to regain some level of ability and to improve your quality of life. 

I feel with the team I now have working with me Guildford Hospital, UCLH, Alison, (pain psychologist at Kingston Hospital http://www.kingstonhospital.nhs.uk/) Maria and Brent that something will change and life will improve. Maybe getting pregnant will help things?! or at least stop my periods for a while.

I'm hoping that you are still awake at the end of this huge blog. I would love to hear your stories

Lily-lou x