March5
People who follow my blog and tweets may have noticed me saying I am unwell, or read previous post about my ongoing health saga, and wondered what the hell is actually wrong with me. I have been asked the question a few times recently, so I guess other people might be curious too.
It’s probably a bit unusual for someone in their early thirties, who looks fine on the surface, to have so many health problems, so this is my attempt to explain things… oh and have a bit of a moan at the same time of course. I have probably mentioned a lot of this before in other posts, but sometimes it’s just nice to get it all out of your system. If you don’t want to read a lot of moaning and unnecessary medical details you might want to give this post a miss.
So to answer my own question, I have fairly severe endometriosis, which has escalated in the last few years to the point where I am no longer able to manage a full-time job and well just being a normal person. Initially the problem was how long it took for diagnosis. From first requesting a referral to finally getting it diagnosed (after paying privately for surgery) took over 7 years, and during this time my health got a lot worse and I suffered with a lot of pain and stress. I was basically being dismissed and told there was nothing wrong with me, when I couldn’t function at all for a large part of the month.
Once I was finally diagnosed I thought everything would instantly get better, but unfortunately I haven’t reacted that well to treatments. There is no cure for endo, however there are various options that can help, ranging from basic medication through to surgery. While excision surgery did give me some relief it only seemed to last 6 to 8 months last time, then the symptoms came back full force. I will spare you some of the gory details, because I’m just nice like that. However a lot of people look at me quizzically when I tell them I have endo and find it hard to understand that it causes so many problems, especially as I look fairly normal.
I have tried to explain it simply and have had some infuriating reactions like, “oh so it’s just period pain”, “oh yeah I have bad periods but I don’t let it bother me”, “you must have a really low pain threshold”or “you must be a hypochondriac”. Of course most people are more sympathetic, but don’t really understand what I’m talking about, so I have decided to try to explain it as well as I can. I can’t tell you how every woman with endo feels, as symptoms can range from mild to debilitating. So I will just explain what it does to me.
While they are a lot of symptoms the main 2 problems for me are pain and exhaustion. The pain varies in location, type and intensity, but it’s mainly pelvic, lower back, legs and generally a lot of pain and discomfort in the lower abdomen. Sometimes it’s just a dull ache, sometimes it’s just nasty cramps, other times it’s a horrible stabbing pain that can leave me curled in in a ball or literally crying my eyes out. I get a lot of bloating, swelling and mysterious lumps and bumps, which can make it difficult to move around or even just sit/lie down comfortably. Before I was prescribed with painkillers I felt almost suicidal from the endless pain with no relief. I cope with it much better now, but I do worry about the long term effects of taking strong pain medication daily
When the problems first started many years ago I would have 3 good weeks a month, then horrendous period pain which would often knock me off my feet. Over time the pain has spread over more and more of the month, and I have basically ended up without any guaranteed good days, the symptoms just change a bit depending on the time of the month.

The average month goes like this. Menstruation which includes horrendous pain, tiredness, excessive bleeding and the appearance of suspected skin endometriosis which seems to trigger painful skin lumps/cysts. Then I have week or so with slightly less pain, breakthrough bleeding, and any lumps that have flared up will slowly start to dissipate. The pain then starts to increase a bit, with a lot of bloating and lower back pain. Depending on the severity I have a lot of trouble sleeping and eating, which can leave me in a fairly zombiefied state. By the time I start ovulating I’m back to my full dose of pain meds with the added bonus of mood swings, and the pain and symptoms gradually get worse peaking at menstruation. Then it’s time to start all over again.
Of course that’s a month without any additional problems, but due to my weakened immune system I often have whatever bug is going round too. As I mentioned earlier, the pain and just feeling unwell can interfere with my appetite, however despite making an effort to eat a lot (with the help of build-up shakes) my weight has dropped to just over 6 stone (90lbs), and I can’t seem to get back up to a more healthy weight. It’s not as bad it is sounds, as I am only 5’1, but it’s still a lot thinner than I would like. I have seen my GP and a dietician about it, but so far the only conclusion they have come to is that I’m somehow burning off a lot of calories just by being in pain. Hmm maybe I could market this to supermodels or weight obsessed teens…
Then there’s the tiredness. While I have always enjoyed being lazy when the mood strikes, I’m actually into doing a lot of stuff. A few years ago I was always up to something, be it learning new code, figuring out software, writing blogs, learning how to snowboard, reading as many books as I could get my hands on and generally enjoying myself. These days my energy supply is so limited I find myself unable to do a lot of the things I want to do. Even something as simple as reading a good book becomes impossible when you have severe nausea or are wiped out from tossing and turning all night. When I have a lot of pain and tiredness I can get pretty dizzy and clumsy, so even something as simple as taking a shower seems like a major mission. On my worst days I’m scared to take a shower if I am on my own in the house, as I know I could easily get dizzy and fall over.
I have a hard time dealing with social activities and have had to take a break from nights out and holidays. I can’t drink these days without getting really sick after just one or two, and feeling even rougher than usual for a few days, so it just isn’t worth it. I feel really bad for not making more effort to see friends and cancelling things all the time, but sometimes I’m just too wrecked to be able to act normal. If I have something important to do, like a family visit, I can generally load up on painkillers and carry on as if there’s nothing wrong, but as soon as I walk back through my door I sort of collapse in on myself, and can then take a day to get over a few hours of socialising.
At the moment I’m waiting to have another laparoscopy (keyhole surgery) to remove endo and adhesions. Last time I had this I was a lot better for about 8 months, so I can’t wait, but I can’t help wishing it was a long term solution. I don’t want to paint too negative a picture of endo treatments, as there are a lot of great options and many women find treatment successful or at least helpful. Unfortunately I seem to react badly to the standard hormonal treatments, so at the moment surgery seem to be the only option.
The most recent treatment I tried was Prostap injections, which basically reduce the amount of oestrogen in your system, leading to a medically induced menopause. While my pain was reduced slightly I had horrible side effects including hot flushes every 30 mins, hair falling out and severe joint pain/discomfort. Since stopping the injections most of the symptoms have stopped, apart from the joint pain, which just seems to be getting worse and worse.
I wake up every morning now with hands like claws and find it really difficult to bend or move my fingers. It gets a little better after 10 minutes or so, but still feels a bit uncomfortable and tight and flares up during the day depending on activity. In the last month a few small lumps have appeared on my finger joints and both of my little fingers seem to kinda pop out of the socket (not sure how else to describe it) when I try to bend them. The pain isn’t that bad really, compared to the endo, but I must admit that the reduced strength in my hands and weirdness of it is bothering me a bit, especially as it seems to be getting worse. My knees and hips are also a bit sore and uncomfortable, but nowhere near as bad as my hands, so I’m not sure it’s related.
I have been to see my GP about this a few times now, and they have given me blood tests and x-rays which are apparently fine. My first fear was arthritis. My dad has fairly severe osteoarthritis, which started in his 30′s, and I know that menopause (and therefore treatments like Prostap) can be a contributing factor in women, but as my test results are all clear I don’t know what to think now. After so many years battling to get my endo diagnosed I really don’t want to have to keep going back to the doctors over and over while they say there is nothing wrong, so I have put it off for the last few weeks. I know it’s not normal though, so I want to get it figured out, I just don’t know if I can face another major battle right now.
I know all this sounds probably makes me sound miserable, and in all honestly it can get me down sometimes, but for the most part I would describe myself as a happy person. While I have had some bad luck with my health I have lucked out in so many other ways. I have a great husband, great friends and family, a nice little flock of cats and I just generally enjoy myself. Even if I am stuck on the couch feeling crappy, I can enjoy great films, books, talking nonsense on the internet and enjoying various other nerdy hobbies. I’m not asking for sympathy, and would generally rather not dwell on negatives too much myself. I guess I just want anyone who at all interested to understand what I mean when I say I’m having a bad day, and not wonder what the hell I am going on about.
If any of you made it all the way to the end of this rant, thanks for reading. I promise my next post will be way less heavy, and hopefully a bit shorter.