I have had a rough summer. It started with an infection, which lead to a bad side effect associated with an antibiotic, and now I have been diagnosed with endometriosis. The ups and downs (ups doesn’t really apply) have come not only from being in physical pain, but from suffering psychologically at the hands of medical professionals and those close to me.
Lets back track a bit: for years I have had bad periods. They didn’t show up that often, but when they did it would mean heavy bleeding for a few days, wanting to jump off a building for the week before it came, feeling like my boobs were being squeezed by a pair of rough hands (in an un pleasurable way) and of course bad cramps. But everyone has bad cramps, so its fine right?
Wrong. A lot of people do have bad cramps, and a lot of those people go to the doctor in search of help when after another excruciating period they think ‘This can’t be right’. So they go along to the doctors. If its the first time they are going, they will probably feel optimistic at the prospect of a doctor shedding (womb pun lolz) some light on the period pain they are experiencing and getting some help. If the doctor recognises that this woman might have a problem, they will give them some medication or, in the best case scenario, refer them to a specialist. I say in the best case scenario because normally it requires a miracle to receive any help bar a prescription for mefanamic acid or a faux-sympathetic gaze followed by a ‘I’m afraid its normal to have to put up with painful periods.’
I read an article about a woman who went to her GP eight times about excruciating period pain before getting referred to a gynaecologist. The problem is that period pain is normalised to such an extent that those who truly are incapacitated on a monthly basis are left feeling pathetic, weak and like it is all in their heads. This mantra seeps into the medical profession and the system of GP’s is such that referrals are expensive and the flawed nature of the system means only the ‘worst’ cases are seen as worthy of a referral . This would be bad if the sole issue was pain, but it isn’t.
The risk of infertility due to endometriosis increases as more scar tissues and adhesions form. Many women have no clue they have it until pregnancy doesn’t happen and the disease is then discovered. Trickier still is the relationship between endometriosis and pain: more endometrial tissue doesn’t necessarily mean more pain.
Last week I had a laparoscopic operation for diagnosis and treatment of endometriosis. They weren’t sure I had it before the operation, and surgery is the only way to know for sure you have it. An ultrasound may reveal cysts formed by clumps of tissue, but in 90% of cases it isn’t conclusive. They found endometriosis and removed it, but I will need follow up treatment most likely in the form of the pill or the coil.
Before I received real help, I was made to feel accountable for the pain I was feeling. It was insinuated that I was anxious, depressed, unstable and sensitive because blood tests revealed no cause for my pain. The more you get turned away and told you are making it up, the more you question yourself and start to think there is something wrong mentally. I have anxiety, but no amount of anxiety lies at the root of the terrible pelvic pain I have experienced and which has gotten worse over the years. My neighbour also has endometriosis and suggested that maybe I didn’t present myself well enough as a case for them to consider it as an option.
It shouldn’t be about how you present yourself. It should be about delivering help to anyone who turns up at the doctors and says their periods are distressing them and causing their lives to suffer. The main problem is, of course, a lack of belief stemming from a firmly held acceptance that the root cause of any woman’s pain is emotional.
The other problem is surgery. The test for endometriosis is invasive, expensive and carries the usual risks for surgery. Here in the UK the NHS waiting time for the procedure is up to 16 weeks. If you can afford private or have insurance, great. If you can’t or don’t, join the back of the queue.
I don’t see attitudes towards womens’ health concerns changing in the near future. Of course it is great that we have a functioning health system that has the equipment necessary to diagnose and treat such a condition, but telling a person pain is in their head doesn’t make the pain go away. If you are experiencing bad pain every month, don’t sulk away and try to convince yourself it isn’t real. Mention endometriosis and say you think you have it, ask your GP to refer you, and tell them its urgent because you hate heavy periods and think babies are cute.