Helen Llewelyn's story
For a disease that affects 1 in 10 women endometriosis is a word that is surprisingly unfamiliar to most. When you do hear of cases of endometriosis it is usually concerned with fertility. If you were to come across an article in a magazine for example, it would usually be a heart-wrenching story of a couple failing to conceive. The story usually ends happily with the production of a baby. For a young long-time sufferer like me, this makes me quite angry, as I never understood how these women with the same disease as me, with all its associated pain and complications could even consider having sex let alone a baby.
It was then I realised there are two sides to this disease: Fertility and Pain. Menstrual pain seems to be worn as a badge of womanhood and hardly ever investigated.
I believed that when women talked of period pain they were experiencing the same humiliating and debilitating pain that I was, it was something we had to experience, but other women were stronger than me and coped better. It was only when I was finally diagnosed that I found out that most women’s pain wasn’t anywhere near as bad as mine and most women had pain-free sex. I wasn’t mentally weaker; I was just living with an undiagnosed disability.
"No person should
have to endure that
amount of pain. Ever"
I would like to talk about the pain I suffered every 15-28 days since I was a child. I have edited this down for the more sensitive among you...
About two days in to my period, it would get really heavy with large dark clots; I would get through a pack of sanitary towels a day. I would have cramps throughout and feel run down and tired, unable to compute simple things. Then it would hit, my mouth would go dry, a pain would start banging in the base of my spine, I'd get boiling hot, feel like I needed the toilet really badly, at this point I've learnt that I have about 15 minutes before show-time, I would calmly try and get all the bits together I would need. I'd go to the first aid cupboard grab the Feminax, get a glass of water, boil the kettle to make a hot water bottle, find the massager, get a towel. By this point I would be feeling really sick, have horrible "tap mouth" where you can't stop salivating, but you're really dehydrated also. My head would spin so I'd walk into doors and walls.
I'd sit on the loo, like if somehow that would help, I'd feel blood dripping out of me. Then it would hit. The big circle of pain would start. I would start sweating, clinging on to anything cold, the wall or the floor, spitting in the sink, throwing up, eventually, if I hadn't laid down I'd fall on the floor. Here I would hit myself with all my strength thumping my back grasping my tummy, pulling my hair, crying, being sick, and the biggest humiliation of all defecating. The shame, the humiliation, the heartbreak of being in so much pain that you can't control your own body. Your womb feels like it's trying to fall out through your vagina, you feel like you're sitting on a large sharp knife, like someone has grabbed your insides and it squeezing them till there's nothing left. Your back throbs and feels really heavy. like the pain is trying to get out.
Helen with her brother Tom
No person should have to endure that amount of pain. Ever. The circle would then start coming round the other way, the intense pain would start to ease, I could stop thumping myself and start massaging instead, my head is spinning, can't stand up, feel like I could die, I actually want to die; at that point there is no reason at all to live, it's humiliating, it's unbearable.
About an hour or two later the pain eases off to a manageable thump and ache and cramp, what I guess I'd call a "normal" period pain, I would get up off the floor and get into bed. The "episode" would knock me out, I'd be exhausted. I would sleep for hours. Waking up is horrible, as it means dealing with the pain again. Sometimes I would hope not to wake up. Not in a dramatic ‘I want to kill myself’ way, in an ‘I can't cope anymore, I can't do this again’ way.
I lived with that getting progressively worse from when I was a child until I was 28 years old. The medical profession wasn’t interested in my pain, I didn’t make a fuss. However, I was sent to a dermatologist for acne and after trying a few lotions and potions, I mentioned an article I had read on Chinese medicine and the associations between positioning of acne and underlying medical conditions. As my acne was concentrated around my chin and mouth my dermatologist suggested I went for an ultrasound of my ovaries.
The doctor that scanned me immediately said: “this is no longer a dermatological issue, it is clear you have endometriosis.” She could tell this from the very large chocolate cyst on my ovary. At that point I couldn’t even pronounce the word let alone know what it was. I was transferred to a specialist endometriosis clinic which was insensitively placed above the maternity unit! Maybe this also shows the leaning of the medical profession to see this condition as a fertility issue rather than a pain problem.
During my year on the waiting list for laser surgery to remove my endo cells and chocolate cyst I wasn’t ever offered any medication for pain. I was given drugs to lessen my blood loss, but nothing to help the pain. I also took the contraceptive pill for three months without a break, but I just bled every day rather than during my period.
It got to the point that I was walking out in front of cars hoping to be knocked down, again, not because I wanted to die, but just to get the pain to stop and get a rest. I phoned my GP in floods of tears. He told me to pop down to Sainsbury’s and get some Nurofen. This was the lowest point, I truly believed that there was no help for me, this was my life, and this is what I had to deal with. At this point my relationships with men (brother, step-father, boyfriends, male friends) had pretty much broken down. I was picking fights; I was aggressive and blamed them for my awful situation.
My GP had arranged an appointment for me with a female doctor; I turned up to see her and immediately broke down. She was fantastic, she gave me hope. She gave me painkillers and anti sickness pills and although it meant my head was now quite fluffy - at least for about two hours out of every four I was in less pain.
A fortnight after this I finally got my operation, about two years after being diagnosed. The operation was very successful, they were able to remove all the endo cells from outside my womb without damaging any of my organs and they also removed my chocolate cyst.
Once I had healed from the operation pain I found that the endo pain came back, it was a lower level, but the pain was still there every day. I was tired, depressed and unable to live my life to the full. Luckily I had anti sickness pills and painkillers to get me through but my mental state had actually deteriorated, I was very angry all the time and still had issues with men. I hadn’t had any sexual feelings for over 10 years and I didn’t feel like a woman.
I was determined to get my life back so I bought myself a book on CBT and chronic pain and worked through this, setting myself goals and identifying why I might be maintaining my illness. One of my goals was to attend the endometriosis awareness day; I did this and met a homeopathic doctor that specialised in women’s health. I asked my GP to refer me to her and, within three months I was at my first appointment.
"Homeopathy has given me back my life"
I was cynical, as I couldn’t grasp how it could work. But I decided to put that to the back of my mind and if it worked who cared about the science behind it.
Walking out of my first appointment, I felt so much better. I walked tall, I smiled, and I was even polite to the builders in the street rather than my usual string of obscenities at any male attention. The reason for this immediate change was that I was finally understood. The homeopathic doctor wasn’t excited by the visible cyst like the conventional consultant was; she was looking at me as a person. Finding out why I had developed the strategies I had, why I was feeling as I did.
The homeopathic doctor prescribed a remedy and I went straight back to the computer to look it up. It wasn’t at all flattering, but it was 99% accurate. It was such a comfort to read my mental state in black and white, it meant that other women felt like this, I wasn’t alone and moreover that there was help. Being understood is such a liberator.
I started taking my remedy a week later and within a month I had started going out again, smiling, dancing, being ‘me’. The immediate effect of the drug was incredible, by my next appointment I was a different person and within six months I was strong enough to look towards advancing my now stale career. I also developed a crush on a male friend of mine, which was the first time I had felt like that since I was about 16. During my 20’s I dated because I felt I should, I drank a lot to numb my feelings and managed to have a relationship when drunk, but I wasn’t happy.
A year or so on and my day to day life is pain-free and during my periods I cope with the help of conventional painkillers, a Tens machine and Homeopathic Magnesia Sulph and Lachesis muta. My mental state is still controlled with the remedy I was prescribed. I can relax, and I can allow my body to heal. I no longer fear my periods, I know I can cope with them.