CP & very heavy, painful periods

Katherine Hayward

Hi,
I thought I'd post about this, as it's of a real worry to me. I started my periods at age 9, and had an early growth spurt. My GP at the time thought all this was related to being so prem, as if the process was sped up. I've never known what to think of that.
I was born at 29 weeks, one of twins (my twin died) & I've got quad CP , hydrocephalus. ,& am registered blind. Since age 11, I've been going to see countless doctors, gynecologists & GPs about this, but to no avail. I was told by my then-GP to take the pill , I didn't take it. I found after that the pill isn't recommended for people with neurological conditions and reduced mobility as there's more risk of DVT and similar conditions. Everyone's stumped by this. I've been told of and recognize the link between stress levels and hormones. I build relaxing into my day and do what I enjoy such as reading, watching tv, keeping in touch with friends and trying not to get down about things. I've tried everything Ive wanted to that's been suggested: trying to relax more, finding the right sanitary protection, and more recently Tranexamic acid to reduce pain and bleeding. This has reduced the pain seemingly (am nearly pain free) the same happens with Feminax, which I have also tried, but neither reduce the volume of bleeding. Before that, i tried paracetamol and ibuprofen, which did nothing at all.
When I was at school and uni, I had to take time off due to my periods, and now they don't let me do what I want. This is especially bad in summer when I can't go to the pool as I'd like! Due to my needs I need support in everything and care when I have my period too. The pain often causes extremely bad headaches, cramps and sickness. I've been to casualty a few times due to my periods, and take iron tablets as suggested by my GP and gynecologist to help with anemia. I try to eat as balanced a diet as possible. On discussing this with my carers who've witnessed it, they recommend a hormone injection or the coil. Some of my carers had to have a hysterectomy due to period problems, I wish to have children with my partner, who's also very worried and supportive about my periods, as he's one of my carers too.
My GP has said I'll have to have the coil if the Tranexamic acid doesn't work. I'm apprehensive as my mum and several people in my family had it and didn't get on with it. I mentioned it to my incontinence nurse (i suffer severe urinary incontinence), she suggested multivitamins, evening primrose oil,& iron. I'm taking evening primrose oil, I find it helps mood swings before and during a period.
I've had endless blood tests for hormone imbalance and poly cystic ovarian syndrome (apparently negative but I didn't see the result).
No one knows what to suggest.
I'd like to know if anyone experiences similar problems, and whether there's a link with bad periods and CP.
Katherine

Eve53

Hi,
I was thinking along the same lines with regards to people with CP having bad periods. I've got mild spastic diplegia and have not coped at all well with my periods. I've had to take days off from school and uni, as my periods really make me fatigued whilst being in a lot of pain. There are some occasions where it gets too much and I spend the day violently throwing up. I could manage just having days off each month, but the amount of pain and discomfort I've been in is not pleasant. I've been on the pill before for a few years, but that really didn't help.
Eve

elf198

Hi
I don't have CP (my daughter who is 2 does) however, I have recently had a coil fitted non hormonal, so I still have periods, which have been slightly worse but hopefully this will settle. My friend has had the coil with the hormones, she has found it great and wishes she had done it before.
So I would consider the coil in your position, once its removed your fertility returns immediately so no problems there.
Hope that helps.

Katherine Hayward

Hi Eve thanks for the reply. I have also been advised against the pill due to my shunt and the fact that this and other similar kinds of medications could adversely affect me and make the pressure inside my brain go up, affecting my shunt. When I get a headache experience sickness I have to be careful as this could signal that something is wrong with my shunt. Headaches are always present when I have my period as a sickness. What do you take for them now? I am now 30 and I'm not sure what to do or who to ask. My periods sometimes tend to stop and start a little after I have had them for over a month, and it is really hard to know when each one is going to begin and end and how long they're going to be. This is disruptive and is even more uncomfortable in the summer. If you have any more advice on how to cope with them I'd really appreciate it. People say that's what my cycle is like and that but it is easier for them to say maybe they don't have the same problem. Sometimes I'm not sure whether to take iron tablets as I'm not sure whether its just coincidence but on more than one occasion after I've taken iron, my period seems to be even heavier. I sometimes take iron when it seems like my period is about to tail off or a little earlier in my cycle to compensate for the blood loss and prevent anaemia as GPs and gynaecologists have advised me to do , but this happens.
Katherine