Lucky or not so lucky

I’ve noticed recently that quite a few of my friends have been mentioning the pain of living with endometriosis

Common signs and symptoms of endometriosis include:

1. Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into a menstrual period. …
2. Pain with intercourse. …
3. Pain with bowel movements or urination. …
4. Excessive bleeding. …
5. Infertility. …
6. Other signs and symptoms.

When I was a teenager I was one of the last of my friends to start my periods. At the time I was ashamed but looking back I was lucky. Once my periods began so did the suffering. Pain like nothing I had ever experienced in my short life. It would begin on day one and continue until the bleeding stopped on day 9 or 10. Most of my friends were regular and knew exactly when to expect their period to begin. I didn’t realise for some time that other girls didn’t experience the same problems I did. I was very irregular so didn’t know from one day to the next when I would have a flood. I often finished a lesson and stood up to discover that both my skirt and the chair were covered in blood.

My periods were generally over a week long and sometimes I would start one only a week or two after the previous one but at other times I could go upto 2 months between. I would need to take pain relief and would spend hours curled up with a hot water bottle clutched to my abdomen.

When I was about 15 or 16 (so long ago now that I don’t remember exactly) my mother took me to see my dr. He told me that I would grow out of this and everything would settle down by the time I was 17. It didn’t.

As the years went by I would like to say that I got used to this. I didn’t. My periods were always long, always heavy from start to finish and always painful.

In my mid twenties I had my first child and a couple of years later my second. Quickly followed by my third. It was after the birth of my third child that I went almost a year without having any periods. I got into a habit of marking on the calendar how many days passed between my periods. Eventually my Gynecologist did some tests and found that I had polycystic ovaries. My ovaries were not working as they should meaning that they didn’t release oestrogen as often as they should and therefore producing eggs. Many women with this problem have difficulty with conceiving.

I feel blessed that not only did I manage to have 3 healthy sons but also had a fourth son. I was given some treatment for this, but not until after my fourth and final son was born. Among the tests I had undergone I had a bone density test which showed that due to my lack of oestrogen over the years my bone density was not what it should be. I was put on the mini pill (even though I had been sterilized by this time). This was to boost my oestrogen levels as I was even in my mid 30s a prime candidate for Osteoporosis. I couldn’t start this medication until after I had stopped breast feeding my baby.

When I was 38 I was diagnosed with stage three cervical cancer. The treatment for this was intensive resulting in what they called a non surgical hysterectomy. At this point I went through early menopause. This was in itself a blessing for me as it meant the end of all those long, heavy and painful periods. It also meant no more babies but I had already finished having my family so that was fine by me.

I know that I am not the only female in my family to have problems with their reproductive system. My daughter in law is currently in hospital having had emergency surgery for an ectopic pregnancy. She has also had two miscarriages in recent years. I myself had two miscarriages (before and after my first son). Two of my sisters in law also had problems.

My daughter in law is very passionate about supporting Tommys Charity for stillbirth and neonatal births. We both believe that the loss of a child at whichever stage shouldn’t be swept under the carpet. Women (and men) should be able to express their loss without it being a taboo topic. I also believe that other “womens problems” are not spoken about enough. Just because these problems are relating to womens reproductive system doesn’t make them shameful. They are not something that should only be spoken about in a whisper hidden from everyone.

I am unlucky that I suffered right from the beginning with endometriosis. I am lucky that this problem was cut short by my cancer treatment. I am unlucky that I had cancer. I am unlucky that I had polycystic ovaries. I am lucky that I had 4 healthy sons. My life has been one big rollercoaster of being unlucky but balancing it out with good luck.

My quiet world

I was in my mid twenties when I first realised properly, what I had always known. I am partially deaf. As a young child I remember several late night visits to the Dr with ear problems. At primary school we had regular hearing checks. We would sit in a quiet room wearing headphones with the instruction to tap the box when we heard the beep. For some reason nobody picked up that I was tapping the box randomly just because I hadn’t heard a beep for a while.

In my mid twenties I was working on a cash desk in a cash and carry store. I realised that it depended where in the line I was working as to whether I could hear our supervisors. I also noticed that I could hear better from my left ear than my right one when using the telephone.

I had a hearing test and was told that unlike the majority of people with a hearing loss I was losing the lower tone spectrum where for most people it is the higher pitch. There is an operation that could be performed but the difference it would make would be minimal so at that time not worth going through, however at some point in the future if the change in my hearing was so that it became more beneficial I could have it done.

In my early 30s after having my youngest son I noticed that my hearing had got worse. Where most new mothers don’t want visitors knocking loudly on their door for fear of disturbing the baby, I had a note telling them to knock loudly. I was often surprised when one of the family rushed to the door when I hadn’t heard it. I had another hearing test. My hearing had deteriorated and now both ears were of a similar level. I would get a hearing aid but needed to decide which ear I wanted to be fitted for. I chose my right ear (I’m not entirely sure why but it seemed logical to me at the time).

Wow! I could hear the trains from our house, I hadn’t known that, or that our cooker made a noise when in use. I wore my hearing aid to work. Ouch my world suddenly became noisy, I could hear every printer, fax machine etc.

In my 40s I had yet another hearing test and this time got a hearing aid for each ear. This helped but it wasn’t really helping me to hear people. It was more a case of amplifying everything. I couldn’t wear them in the company of a group of children. Being involved in a local youth football club I was often in a sports hall with a group of enthusiastic children. Because I have no problems hearing high pitch it would become painful for me.

By now I had learnt that most children and the majority of women (so long as they spoke normally and didn’t whisper) were fine for me. However I have a problem if people are facing away or speaking from another room. Men who have lower tone voices and or have their hand over or near their mouths I have no chance.

I don’t watch a lot of tv, or rather I only half watch it because I struggle to hear what is going on. I miss the punchline on jokes. I guess I probably only hear about a third (if I’m lucky). It’s almost like watching silent movies with the odd words thrown in. Even talking to my own family especially my sons is a struggle. It is not unknown for me to think the topic of conversation is completely different to the actual topic.

Sometimes my problem isn’t the volume, I can hear people talking but it sounds to me like a foreign language. I have to listen out for clues but by the time I have figured it out the conversation has moved on to something else.

Contraction words are a big problem for me. I never know if someone could or couldn’t, would or wouldn’t etc. This is why I prefer to communicate via the written word rather than the spoken word. This has also caused a problem in my creative writing. I find it very difficult to write as people speak because I feel a need to make every word clear just as I would when I speak. Which I know is not natural for most people.

Through out my life I have been asked “what was that?” or “did you hear that?” Very often I didn’t hear anything. I am sure that for everyone who can hear properly it must be difficult to understand what it’s like to be in my world. I often get asked why don’t I wear my hearing aids more often. They don’t actually help. If I wear them I still can’t understand what people are saying but when I take them off I notice that the world has gone quieter. They make the world around me noisier but rarely make it easy to hear the spoken word.

My husband often said he would get an old fashioned hearing horn to shout into my ear. Not very helpful.

I want to ask my GP to arrange another hearing test for me(its been about 7 years since my last one) but feel that with everything else going on at the moment it wouldn’t be a priority for the NHS. I manage my life reasonably well in my semi silent world, it would just be nice to hear everything going on around me.