Tuesday, 1 April 2014

Pain management and a chemical menopause

Current CA125 level: 11
Current pain level: high
Mood: weary and uncertain

Things have been on a bit of a roller coaster since I last wrote. Everything had been starting to get better since the hysterectomy last July and I was starting to feel physically stronger. Then a few months ago the pain came back and it's been getting worse ever since.

I've always had some residual abdominal pain since the hysterectomy but day-to-day things had started to become a bit easier, like walking Molly to school and carrying Tess around. I got to Christmas feeling positive about the future and hopeful that hospital admissions were finally behind me. Then in January I noticed the pain getting worse. It started becoming more frequent and sharper. And after a few weeks I started to feel bloated and uncomfortable, and was finding eating meals difficult. After a month things hadn't improved, and with pain, bloating and feeling full all symptoms of ovarian cancer I phoned my oncology nurse at the hospital. She immediately got me an appointment and a couple of days later, at the start of March, I went to see my oncologist.

By the time I went to the appointment I was in a lot of pain. My oncologist took one look at me when I walked, or rather slowly shuffled into his room and said I needed to be admitted into hospital. I'd been expecting him to send me for a scan so it was a shock to be admitted on the spot. I was totally unprepared for being back in hospital and hated that, for the second time, the girls would have to cope with me disappearing into hospital without warning. I was also really worried the cancer may have come back or that I might have another pelvic infection, and I was convinced I was going to end up having surgery again.

Thankfully, a CT scan and an ultrasound scan the next day showed there were no abnormalities, and my CA125 blood test came back at 11, well within the normal range. (CA125 is the chemical in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer. The upper range of normal is 35.) It was such a relief - no cancer and no surgery! But with the reason for the pain still unknown, it was decided I should be referred to a specialist oncology surgeon for further investigation. Eventually, after five days of pain management, I was discharged and got to come home - it was so good to be back with the girls!

A week after coming home I got a surprise call from the hospital asking me to go for an MRI scan the following day. It was one of those sickening moments when you get an unexpected hospital call and are left panicking about what it means. But my oncology nurse phoned later that day and explained the new oncology surgeon wanted me to have one so he could look at what was going on. Panic over!

I had my appointment and finally got to meet him yesterday. He was very nice, although greeted me by saying I was famous and that he'd been hearing about me since my surgery last year - not really what you want to hear! In medical land it's sometimes better if they don't know about you - if they talk about you it's because there's problems or because you're an unusual case, something I've been told many times! Anyway, he said at the moment there's no clear reason for all the pain but that, given where it is, he would expect it to be caused by either the bowel, bladder or remaining ovary. He said looking at my notes he'd considered malignancy, bladder or kidney stones, or infection. But there's no clear evidence of any of those from my scans. So, rather than proceeding straight to surgery he wants to put me in a chemically-induced menopause for 3-4 months. If that alleviates the pain then the problem is more likely to be coming from my ovary than anywhere else. Being put into the menopause will also stop the flare up of any endometriosis, which could be adding to the pain.

In the next week or so my GP will start giving me a monthly injection of Prostap-SR. Because it prevents the production of oestrogen and effectively shuts down your ovaries (or ovary in my case), it's likely to bring all the typical symptoms of menopause: hot flushes, night sweats, headaches etc. Not exactly a lot of fun and I can't say I'm particularly looking forward to it. But on the positive side it might reduce or even get rid of the pain, and as I'm writing this with a hot water bottle practically strapped to me to try and ease the pain, that's got to be worth it. In 3-4 months I'll go back to see my surgeon again and, based on how the injections have been, the decision will be made about whether or not to operate.

Looking ahead I feel pretty weary at what's to come. Not only am I facing a chemical menopause, but on the other side of that there's the prospect of more major surgery. And in the meantime there's no guarantee the injections will even stop the pain. Trying to carry on day-to-day with chronic pain is utterly exhausting, and having the hospital back in my life so regularly is hard to accept in many ways. I'm 8.5 years on from first getting ill with the symptoms of ovarian cancer and still it's a dominant feature in my life. But then I know how lucky that makes me - many people diagnosed with ovarian cancer don't get to go on and do 8.5 years of living.



  1. Has your oncologist not recommended the last part of your ovary out, or is that more your decision?

    1. Hi Christina

      I think that will be the next step. At the moment they're wary of doing another surgery because I've had 4 major operations already. They think it's possible some of the pain I'm having is down to adhesions, and further surgery would only make that worse.

      So for now, they're testing out shutting the ovary down to see if that gets rid of the pain, or at least reduces it. That way they can decide whether it's worth removing the ovary or not.

      My oncologist didn't agree with my ovary not being removed when I had the hysterectomy last summer, but as it was done under emergency conditions he wasn't consulted (pretty rubbish!). When I spoke to him afterwards he said that going back in to remove it when it was causing no immediate problems would be unwise given all the surgery I've had. But now it seems it is potentially causing problems so that's all changing again!

      For now I've just got to wait and see how these injections go and take it from there. I'm a bit nervous about what menopause symptoms I'm going to get, but the pain is so bad now that I'm just hoping it'll be a good trade off!

      Em x

  2. And, thank you for writing about all of your endeavors!

    1. Thank you for taking the time to leave such a lovely comment!

      Em x

  3. Have read every word you have written.........amazing! How are you doing now?

    1. I'm doing well thanks Denise. Still continuing with the Prostap injections and dealing with all the menopausal side effects that come with them, but that's certainly nothing to complain about.

      Thank you so much for reading my blog. I'm really glad you enjoyed it.

      Em x

  4. wow impressive perseverance, keep going~


If you'd like to comment on anything in this blog, or have experiences or thoughts of your own that you'd like to share, I would love to hear from you.

Thanks for reading!

contact me

 photo fa636b96-9535-402f-b9be-e199a83e90e2.jpg