On the 20th January of 2010 I had an appt. with Liz who was a specialist endometriosis and pelvic pain nurse. I had found the details for the self referral to Liz from my Endo UK support group. It was an evening appt. at a hospital I hadn't been to before which is just a 20 minute drive away. The hospital is enormous (compared to what I am used to). It was easy to park and they have a reception area so I could get directions. After walking for what seemed miles around lonely quiet corridors I found where I was supposed to be.
Liz was really friendly and put me at ease straight away. She asked me to start at the beginning and tell her everything I thought was necessary for her to know. As I was going through things she would ask me questions and take notes. Once that part was done she gave a a questionnaire to fill in. It was a pain scale from day 1 of my cycle to day 28. She wanted to know when my pain was worse plus there was a picture of a woman and I had to colour in the areas that I suffer with pain. I don't remember what else was on there I will try and get another copy and see if I can post it here.
After the questionnaire was done Liz asked me what was being done for my endo at this moment in time to which I replied nothing just painkillers when I need them. Liz made a note of the meds I was currently taking. Finally once she was happy she had all the information she needed she gave me her opinion. The first thing she told me was that she thought I needed surgery. My painkillers needed changing and she wanted to get me transferred to the endo surgeons at UHW. For the first time I actually felt like someone was listening to me, truly listening.
The next steps were going to be Liz contacting my GP's to get me on painkillers that would help with the pain much better than those I was currently taking. She would also write to my specialist and ask for me to be transferred to UHW for excision surgery. Liz was sure my specialist would agree as he was just a general gynae and basically as an awkward patient for Mr E he would be better off not having to deal with me. Liz assured me that of all the specialists she had written to she had not had one refuse. At the end of the hour appt. I was so relieved I fought to hold back my tears.
Once again it was back to waiting. Liz promised the letters would be done and posted by the weekend. I gave it 2 weeks and made an appt. with my GP's to get rx for my new meds. The best thing I now had on rx was lidocaine pain patches. I could use up to 3 for 12 hours but then had to leave them off for 12 hours. They were great as I could put them right on the area causing me pain. Mostly I have used them for my lower back pain. This is the pain that makes it difficult to walk, I end up leaning forward and having to sit down as soon as possible. I also had three different lots of tablets for different levels of pain. I was also to start taking the pain meds two days before I knew the pain would start to try and stop the higher levels of pain happening.
Mr E wouldn't refer me to UHW without seeing me first and talking through the difference in the surgeries. He would have done laser removal although during my many appt.'s with him further surgery was never mentioned. I saw him in the April he basically wanted me to know that excision was much more invasive and there were many more complications that could arise. I already knew this as I had done a lot of research myself. Once he was happy I knew what I was transferring to have done he agreed. Now I had to wait for him to write back to UHW. The letter was sent on April 27th.
Waiting, waiting, waiting isn't that all we seem to do with doctors appt.'s! Finally I got an appt. with Mr P at UHW in October. J (my husband) came with me. Mr P was lovely really down to earth not like many other doctors you meet he was a real people person. He asked me lots of questions, questions that no one else had ever asked me before. Questions that were actually relevant. He examined me which as any woman will attest to is really uncomfortable and embarrassing. It doesn't matter they are gynaecologists and have seen it all before! He agreed that we should go ahead and do excision surgery so he filled out all the paperwork to get me on the list. Here in the UK you are supposed to have treatment started by 26 weeks from referral. November 26th was my 26 weeks date. Mr P told me that they were running 2 months behind so we were likely looking at the end of January 2011. He did make a note on my file that I was happy to have surgery Christmas week which would have been the 21st or 22nd. Apparently most people don't want surgery right before Christmas I didn't care I just wanted it over and done with.
At least now I had an idea of when the surgery would happen. That it really was going to happen!
We also spoke about fertility. Mr P set up SA for J. You would have thought such an easy test would have been done two years before. So things really seemed to be moving in the right direction at last. He gave us everything we needed and I just had to phone and make an appt. for a time that suited us. The earliest available appt. that fitted in with work was late November so we had five weeks to wait.
So back to waiting. I had a pre op appt. pretty quickly so I did hope that the surgery may just get squeezed in before Christmas but that was not to be. I have a heart murmur so I had to get that checked before they would approve me for surgery. Nothing is ever easy is it? Luckily the echo was done within two weeks which is extremely quick now I just had to hope all would be okay for the surgery to actually happen. I don't know what I would do if they said they couldn't go ahead.
J had his SA appt. late November. We saw Pete he asked us some questions, how long we had been trying, if I had ever been pregnant, that type of thing. Then he asked if we were on the IVF waiting list, when we said no, he asked why not. So I explained that I had been unable to get anyone to refer me. He said that my GP could do it. I told him that my GP's had told us that they couldn't to which his reply was "rubbish!". The SA results would go back to Mr P and he would write to us with the results. The letter came through, but instead of results, the letter stated the test needed to be repeated. I booked another appt for Jan 13th.
I heard nothing from the hospital for my surgery before Christmas. On my return to work after the Christmas holidays my boss asked if I had a date yet. I telephoned Mr P's secretary to find out so I could let my boss know. She confirmed I had been booked in for Feb 15th. I was surprised as I had expected to just be told not yet and have to keep waiting. I finally had a date.
J had his second SA done and the results came back as sub optimal and that Mr P would discuss it with us at my post op appt. Now it was just 4 weeks until surgery. I just let everything be for 4 weeks I needed to relax and not worry about SA results. I concentrated on work and getting things done before Feb 15th.
It is now 8pm on Feb 13th. I am nervous, anxious even but also hopeful. I hope that this is the surgery to decrease if not rid me of pain. I hope this is the surgery that makes our family a possibility.