I started my periods aged 11 and they were painful from day one. Dysmenorrhoea (ie excessively painful periods) is common amongst even the healthy population and suffered by up to 75% of women but it’s even more common in Ehlers-Danlos patients with a suggested 92% of women having painful menses. When I could take pain killers it wasn’t too much of a problem – a few Feminax or some Mefanemic Acids tablets and it was down to a dull roar and I could carry on my normal life, but when I became allergic to painkillers in my mid thirties it became much harder to live with.
There are various theories as to why having EDS causes excessive period pain but in truth we don’t conclusively know the reason. With up to 75% of healthy women also having dysmenorrhoea there are factors involved which obviously have nothing to do with EDS and in my mind EDS just complicates an already common problem.
When I hit 40 my EDS got much worse and on top of that my (pre-existing but largely a-symptomatic) Mast Cell Disease went nuts. About 10 years ago I developed lower, right abdominal pain. It’s a stinging pain. It doesn’t come and go, it’s there all the time, but it does get much worse when I ovulate and during my period. I had investigations and my right ovary looked totally healthy. Endometriosis was suspected but the only way to know would have been a Laparoscopy and for that I needed a general anaesthetic – no way Pedro, not after I’d already had a reaction to general anaesthetic after having spinal surgery when I was 16, longgggg before my MCAD caused me any drug issues whatsoever. Gawd knows what would happen now!
Over the last decade my pelvic pain has gotten worse. Much worse. Ovulation, whichever side it’s on, can be excruciating. For 4-5 days before my period I suffer stomach cramps, increased lower back pain and bowel pain (which can get so bad I have to do labour breathing when I poop) and for the 3-4 days of my actual period my entire pelvis and the tops of both thighs feel like they’re on fire. This often doesn’t settle down until I ovulate, up to 14 days later – I’m not saying it goes, just that it becomes tolerable. So I’m basically in pain all the time. A burning pain, which radiates down to my groin and pelvic bone on the right side and goes across my lower abdomen. And on top of that I have the constant stinging pain on the right-hand side which I always assumed was a problem with my ovary. It’s not a lot of fun.
The Gynae Consultant on Monday seemed perplexed by my pain. Both my ovaries look totally healthy. I’ve obviously had various cysts over the years but they’ve all resolved – many women get monthly ovarian cysts, sometimes quite large, and they don’t cause the constant pain I have. I may have endometriosis which is notoriously difficult to diagnose, though if there were adhesions sticking any of my organs to each other this would usually be seen on an MRI and my MRI in November was totally normal (other than finding a 5cm right ovarian cyst which has now disappeared). Pelvic Congestion, where the veins in the pelvic area expand (more common in EDS) would also usually show on MRI and mine all look tickety-boo.
I do have lots of uterine fibroids, both internal and external, and fibroids can be painful. But from reading various online message boards about fibroids the pain experienced is nothing like the pain I have so I’m doubtful they’re the cause of my issues either. To think I could go through the trauma of having a hysterectomy and still be left with the pain totally freaks me out.
There is always the niggle in the back of my mind that my pelvic pain is down to my bowel and nothing whatsoever to do with my lady bits. I get sharp, stinging pains from my stomach to my backside, alongside chronic burning pain which can only be inflammation. A belly MRI 5 years ago showed a totally healthy GI tract though, from stomach to bum, so again if anything serious were going on surely to goodness something would have shown up. I’m sure my entire GI tract is chronically inflamed but would that cause the kind of pelvic pain I’m enduring? I really don’t know. When I talked to the Gastroenterologist he thought some of my pain could be Gynae related, and when I talked to the Gynae this week she thought some of my pain could be Gastro related!
My worst nightmare is that I undergo the trauma of surgery only for them to open me up and find a totally healthy looking pelvic area. No endometriosis, no scarring from previous burst ovarian cysts, and no real explanation for my pain. It could simply be chemical from my MCAD (mast cells leak mediators which cause chronic inflammation and the uterus is packed with mast cell receptors) and, as I struggle to take any of the drugs used to treat Mast Cell Disease, I might just be stuck with it. Forever. Somebody shoot me. Or maybe having my fibroid packed womb out will at least help, if not cure.
Like most issues with my body there just are no easy answers. You can only do what feels right at the time and, if I do get to have my womb removed I don’t think I’ll regret the decision for a single second, even if the op and post-op period is rough. Having had dysmenorrhoea for 37 years I’m just over it and the thought of never having another period in my life sounds like heaven. If my ovaries are healthy I’ll get to keep them which, given my family history of early osteoporosis, would be beneficial and means I can have a more gentle slide into menopause. I’d also like to keep my cervix, cos I’m not sure how orgasm works without one (and no-one seems to talk about that on the message boards!). This all might be a mute point though as the Anaesthetist might say surgery is just too risky given my MCAD/drug allergies.
I’m having an MRI scan tomorrow (Friday) which will give a better view of my fibroids then I have to wait for an appointment to see the Anaesthetist who will decide if surgery is an option. Wish me luck.
p.s. I should have made it clear that I don’t have heavy bleeding with my periods, quite the opposite. I always thought fibroids caused heavy periods but according to the Consultant if they are on the outside of the womb they have no effect on bleeding.