Welcome to my 'walking the talk' page. I have hypermobility syndrome. Unless you have experience of it, it is unlikely you understand to complex nature of it (only 1 yoga teacher, whose family member is a researcher into the condition has ever commented on the complications that go with JHS), it is more than 'being bendy.' I have too much collagen. It means, yes my joints are hyperflexible, but a host of other things; my skin is very stretchy, I am more at risk of other problems and one of those is, I am very good at developing growths in my body.
I currently have a few growths in my body, and one in particular is looming large.
It is as far as we know (until we get absolute biopsy, we don't know for sure), benign, and I am about to undergo surgery. I have a minor growth too, which also will be tested in the same surgery.
The reason for this log?
Well, when I looked for information on the web, I couldn't find a great deal out there. So I thought I would chart my progress. This is scary - and - well I am a therapist - and work in the exercise industry; I have experienced 2 rounds of recovery from serious situations prior to this, and this time, I thought; why not log it as it happens? I know many women get cysts of different kinds, I am far from the only one!
This is my 5th large cyst. The other 4 resolved by themselves.
Monday: 4th Nov 2019
I am having an OK-ish day today pain-wise. When I saw the consultant (the GP had delayed my appointment so long, that when she finally saw my scan, she put me straight through to a private hospital), and the gynaecologist said I had been left too long.
It turned out that due to my hormone levels (I am 44), and my JHS, I have a large follicular cyst on the right side that cannot resolve itself, no matter what I try.
With the best will in the world, best diet, etc., etc., it will not budge. My hope it is will 'just burst' - but nope. There is no miracle. Sometimes you have to just accept that.
I have known from 'day 1' this one has been different, because I felt it. Whereas the other 4 I was oblivious to. This hurts, a constant stabbing presence in my right abdomen. It ranges from annoying to full-scale emergency - head-to-toe sweating with pain; shaking head to foot. I have attended A+E twice because of it. I once spent 7 hours at A+E because of it; prior to diagnosis; with the doctors thinking it was an appendicitis.
As a working therapist, my knowledge of pain kind of scared me. I know that lumps that come with pain are NOT a good combination, but all scans are so far, reassuring.
It has now reached the level where, for the last 2 months, I cannot eat normal sized portions of food. For the last few days, the feeling of nausea is overwhelming. It is exhausting.
I have been told I need to have it, plus probably my right ovary removed, I am possibly forming a new lump on the left too. For someone who has had many cysts before, and already has other growths, it didn't seem too big a deal, but there was a kind of tipping point, and now I am counting the days to surgery.
Otherwise, i feel quiet well. I drink water well; all clear teas well, and normal tea. I can tolerate fruits and moist foods. Some days are better than others.
I have totally (maybe temporarily) gone off my beloved coffee!
I can walk and exercise, provided I am not in severe pain; in fact exercise - tai chi, qigong and nei gung are excellent for me - stretching is brilliant.
Deep breathing and relaxation are paramount, being able to tolerate the pain, and be present and still, really important to deal with the muscle spasms that happen around it.
I pace myself, and rest frequently throughout the day.
Over time, I have thrown everything at the cyst, heat, cold, massage, therapy, acupressure, herbs (typcial 'womens herbs', macca, - balancing herbs and vitamins), baths, salts, essential oils, mind, body and spirit approaches, you name it. I journal, reflect, meditate etc.,
It is not for a lack of self-care. In fact, I don't think I would have made it, but for the support of those around me, and their ministrations.
My hope is that, over the days, and weeks to follow - we will see a path unfurl.
The things few people talk about...
posted: 4th Nov 2019
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