Hi all, had a bad week/month, and could do with some advice. I don't live in the UK anymore, but feeling at a loss concerning where to do/what to do. Sorry if the following essay has TMI--thought it necessary to provide context. I know this is really long, but I'd be really grateful is others could impart some advice/share their personal experiences.
I had to move country last month, to be with my partner. He largely supports me due to illness, we're not married though would have been willing to marry to get him a spouse visa. Unfortunately, without a formal diagnosis of endometriosisI the government did not acknowledge my pain as a disability, hence I was, like everyone else, expected to earn over £18.5k per year through full-time employment (can't come from freelance work, and I'm a freelancer earning considerably less than that). Otherwise we need to have over (approx) £60k in savings between us. We'd like to come back to the UK someday, financial situation permitting.
Anyhow, we now "live" in Seoul. I'm here as a tourist, as is my partner who has Korean heritage, though we're planning on getting longer term visas if we can this summer in Argentina, where my partners' parents live. We travel a lot for the work we do.
As you might imagine, all of this makes sustained treatment/diagnosis impossible. I am trying to get an MRI done while in Seoul and see a specialist, though in another language it is of course difficult to understand how qualified someone is.
History of illness: In September 2015 I started feeling left hip pain, that sometimes radiated down my left leg. In October I started having bowel symptoms, constipation followed by diarrhoea. I thought initially it was a strain/tummy bug and tried to ignore it. I went to India, and immediately, 1 or 2 days after arriving at a friend's house experienced severe bloating, interstitial cystitis symptoms (urgent and frequent need to urinate) and having mucus in stool, or just passing mucus. It continued like this for a few weeks, probably also accompanied by delhi belly which led to nausea and other issues.
I came back to the UK 6 weeks later and experienced intermittent bowel and bladder symptoms. I got tested for UTIs, negative.
In February I had a pulsating pain I'd never experienced before on the left side of my pelvis, which turned out to be implantation pains. In late February I found out I was 4-5 weeks pregnant, and ended up getting an abortion. This went well, but I continued to pass ONLY clots post-abortion and even now, one year later, my periods are replaced by clots.
Strangely the pregnancy and first few months post-abortion cleared up the bowel/bladder symptoms. In July I went to Argentina, and again they came on full-force less than a week after arriving. I felt like I constantly needed to pee, and could only pee in a squatting position. Again, I was also passing a lot of mucus. This calmed again after a couple of weeks, then just over a month later I was in Mexico. Everything was going fine until I woke up in the middle of the night with a stabbing pain just below my left rib cage. I am not sure if this is connected, but I never felt anything like it before.
During my time in Mexico I also started sensing a pulling sensation/pressure in the left side of my pelvis, that I only felt at night--it was difficult to pinpoint but the pain felt deep within the pubic bone, might have been referred pain, and there was definitely pressure on my bladder.
Yet another month later, and I was in Cuba. I had a period, then a day after it the symptoms I had been experiencing since Mexico got even worse, continuing into the day. They were worse when lying/sitting down, and again I felt I could only pee properly when squatting.
I came back to the UK one week later, and the pain was getting out of control. It was so bad I just wanted to die, I had pulsating pain also in my left breast and left shoulder blade. I ended up in A&E when the pain got really bad, and eventually got hospitalised at UCLH. A smallish 3.6mm cyst was found on my left ovary but didn't seem to make the doctors concerned. I got a CT scan and nothing seemed to be out of order--they mentioned they couldn't see much within the bowels due to gas. I never got offered an MRI.
I continued to have periods where only blood clots came out, and got put on the pill and told to take it back-to-back. It had been working, I think, and though an ultrasound scan in February showed that the cyst was still there, and had grown a little, the diagnostic laparoscopy and hysteroscopy from a general gynecologist I had at the end of February 2017 picked up NOTHING! Needless to say, I was devastated. Over a year of life-altering pain and then I was told that I was alright.
I had a referral for the pain relief clinic back in October 2016, but got an appointment so late before my partner's visa expired that they couldn't do anything for me (in late March--we were leaving in mid-April).
So I thought I was okay for a few months; I had the diagnostic laparoscopy when I was actually in little pain, and after the initial recovery period I felt better. In late April, after just arriving here in Seoul I started spotting, and this continued for a month alongside faint echoes of the pain I had experienced last year. It got even worse 2 weeks ago, and I found myself again with mucus in my stools and a need to urinate frequently and urgently. If I don't, the pain is felt as a severe pressure in the left side of my ovary.
Today in particular has been awful. I felt nausea, lower back pain and was bloated. I feel like I have something putting pressure on the inside of my thigh/groin--it almost feels like I could reach my finger into the left side of my vagina and pull something out. Putting pressure on the area does alleviate the symptoms, but I'm just so tired...
And I really don't know what to do.... Could this still be endometriosis? Could it all be caused by a tiny cyst that keeps growing back (or potentially grows bigger but never in time to get seen by gynos). Could this be something more sinister such as colon cancer/ovarian cancer?
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