I FINALLY had my specialist endometriosis appointment at UCLH. It did go to plan (well, sort of)!

It took ten months of pleading, tears, tantrums, and epic disasters, but on Thursday I FINALLY had my specialist endometriosis appointment at UCLH. I knew I was booked in to see the specialist endometriosis nurse and a consultant, leaving me feeling equally excited that I was going to be making some progress at last and terrified about what treatment plan would be devised for me.

Through the trauma of gaining my diagnosis and fighting for the specialist care I knew that I needed, I never gave up (even when I really really wanted to) because I truly believe I can feel so much better than this. I just want to get my life back, at least as much as I can, and start working towards all the things I’ve been dreaming about: a satisfying and challenging career, buying a home with my partner (lets call him Mr B :-)), having kids etc.

Mr B and I arrived at UCLH in good time, and within 10 minutes I was called in to see the endometriosis specialist nurse. It was actually so lovely to talk through my history with somebody who is empathetic and knowledgeable about the condition, and she explained that with my endometriosis in the state that it is currently that surgery is likely to be the recommended option for me. So far, so good. She then asked if I was to see the consultant today and I replied that I was and showed her my confirmation of appointment. A quick look on her computer however showed that, actually, I had NOT been booked in for an appointment with the consultant.

First *face palm* of the day.

First *face palm* of the day.

Words literally failed me. I think it’s a marker of how many health system disasters I have had in regards to my endometriosis that I didn’t cry or even get angry. To just be there for ten minutes to discuss my patient history was not what I had in mind- I need a little less conversation and a little more action now. I stood firm and insisted that a doctor met with me today- despite her protestations that I would be unlikely to be seen today as all the consultants were ”over-booked”. These aren’t my errors but I am constantly having to pay the huge physical and emotional price with no apology provided. In the end she agreed to speak with the consultants at the end of the clinic to see if they could squeeze me in, and then I was sent off to the waiting area to sit and stew while they made a decision. Mr B’s face was literally hilarious when I told him about the mistake, he just couldn’t believe what was happening.

After a mildly traumatising hour long wait, the nurse returned and said that a consultant had agreed to see my at 3.30pm. Annoyingly, this left me feeling pathetically grateful- like they had done me a favor, rather than having just sorted out their mistake. This little break gave Mr B and I the chance to head into London for some shopping and to stuff our faces with Japanese food and gelato. So there were some silver linings to the day. πŸ™‚

Upon our return to UCLH I was able to see the consultant after a mere two hour wait. Fortunately, they have a TV in the waiting room to help pass the time. Unfortunately, they were showing Deal Or No Deal. But hey, beggars can’t be choosers right?! The consultant was a fairly friendly chap, and he reviewed my ”confusing” patient history (his words, not mine) and then went through all of my questions with me. I was a bit disappointed if I’m honest that he hadn’t been able to look through my history or consider my case beforehand. He opened with ”your main problem is pelvic pain and pain on intercourse yes?” NO! And then followed with ”and you haven’t been diagnosed with endometriosis through surgery no?” YES-I HAVE!

Second *face palm* of the day.

Second *face palm* of the day.

After some minor corrections and discussion he laid out my options (do nothing, hormones, surgery), and we both agreed that surgery is the way forward to me. So I am now on the (four month) waiting list for a nice bit excision surgery. Progress! Hallelujah! They are going to get what they can and take my endometrioma on my right ovary, but said that while they will attempt to deal with my diaphragm and bowel problems, that this may require a second surgery depending on what they find. He also said that they would be able to give me more detailed and specific fertility advice after the surgery had taken place.

So after a slightly chaotic and underwhelming experience that’s where I am now- waiting again, but this time it is a positive wait for action. I’m so happy that I am on the surgery list-I wanted that resolved before my wedding in two weeks time so I am not just worrying about my lack of progress. It gives me some time to think about and process things, and plan out the next year if my life a bit before the surgery. With my luck they will probably end up doing the wrong surgery and amputating my leg or something! I was also so glad Mr B was with me, I don’t think I could have coped with the mishaps if I was on my own. He is great company in a crisis, he has the calm head that I lack.

Have any of you had excision surgery for your endometriosis? If so, did it help to reduce your symptoms? Your thoughts, experience, and advice on this would be much appreciated.

Love,
Claire
xxx

10 thoughts on “I FINALLY had my specialist endometriosis appointment at UCLH. It did go to plan (well, sort of)!

  1. I am so happy for you. I know the pain of waiting and waiting only to leave lost, confused and feeling that you are not progressing so this is amazing. I have had an oopherectomy laparoscopical and although I did not feel the benefits immediately (my cyst grew back) with the progesterone I have not experienced any ruptured cysts and touch wood am on the way to leading a normal life again xx love & light xx

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      • I had that one in oct ’13 and I will tell you I was totally not expecting how long it took to recover. I had a cystectomy and drainage (sorry not an oopherectomy which I wanted – see my post for why my head is not with me right now!) I had keyhole but inside is more like a c-section so raising my hands and walking was super difficult for three months. I was due to have my right ovary removed this year but it seems the progesterone is doing well for me and I have less pain and (possibly) no more growths. It is all up to the consultant as they want to remove as little as possible from you and wait 3 months, then six months then … Luckily meds did in fact work for me so at least I did not need another surgery. All the best xx

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  2. I had my first laparoscopy in march 2011 when I was diagnosed and they excised what they found. They didn’t do a very good job though and I was back in october 2011 for a second surgery. After the 2nd one my pain was much better and it is only now that the pain has gotten back to the point of needing more treatment. I am now waiting for my 3rd lap after also seeing a specialist in london at guys and st thomas’s. Maybe we’ll have them around the same time! I hope it helps for you- it can be a great help despite the stress of having surgery πŸ™‚

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    • Thanks so much for this lovely and supportive comment. Yes, maybe we will be surgery twins, you will have to keep me posted. I’m always glad to hear that the surgery has been helpful to other people. Keeping my fingers crossed it will help me and allow me to function a bit better.
      Keep in touch and thanks again,
      Claire
      xx

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  3. YAY!!!! It’s about damn time! ❀

    And yep, my excision surgery has helped tremendously with my pain! Surgery in June, Lupron August to January, continuous birth control pills now. And no pain…well, up until about 2 weeks ago when I had a 3-day intense pain flare-up which left me in bed for the whole 3 days. But an ultrasound didn't reveal any new cysts or endometriomas…so for now we watch and wait. πŸ™‚ But, yes, it really did help.

    Four months will go by quickly πŸ™‚

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    • Thank you so much! This really comforted me. And you’re right, I know the wait will go quickly. I’m actually getting slightly nervous already, but I’m excited too! I will do anything to try and claw some quality of life back.
      Hope you are doing OK?! The other day I read through your entire blog. It’s SO AWESOME! You are a blogging machine πŸ™‚ Keep up the good work.
      Claire
      x

      Liked by 1 person

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