I was
referred in January 2011 to the Pelvic Pain clinic at University College London
Hospital and I finally got my appointment in December 2011 to see Natasha
Curran. It was a long wait but so worth it!
Natasha
started the consultation asking what my expectations were. Obviously I would
like a magical cure but know that is not realistic so I opted for less pain. I
found her to be really empathic and really willing to listen to me. At one point
she looked me directly in the eye and said “sorry that I couldn't work at the
moment”. I was quiet choked by this. It is a big thing for me and the first
time a doctor has said that and understood the impact of this.
At the
moment due to trying to conceive, they are limited to what our options are. I have
been offered a Pundenural Nerve block to try and help with some of the pain I experience from the Vulva, up the bum and clitoris, although
she doesn’t think this is the answer. Although I have a needle phobia I am
going to go for it. I would normally prefer to be sedated for the procedure but
Natasha doesn’t sedate her patients as she likes to be given feedback by the
patient during the procedure. She stimulates the nerve first with a small
electric current. She has instilled faith in me so I am going to go for it. I
am currently on her cancellation list as I can’t plan due to my irregular cycle.
The other
thing that she thought would be useful to me would be to attend the pain management
programme called LINK. During my initial assessment with Rebecca McLoughlin (Pain
physiotherapist) we realised I would not be able to attend a weekly programme
due to my cycle so I will be working one to one with Rebecca. I had my first
appointment with her on Monday. Rebecca doesn't work in a hand on capacity, she
will help me look at various things in life that I have problems with due to
pain.
The first
thing we are looking at, is sitting. I have problems with sitting due to
Vulvodynia and Vestibulodynia anyway and after my last operation this has been
impacted more by pain from up my bum and the Piriformis. It just feels like I’m
sat on bone and nerves. (Maria has told me that you lose muscle bulk in these
areas when in pain that’s why I feel like I am sitting on my bones and nerves.
If the pain goes, then these muscles should bulk back out again). I carry a
cushion in a bag to sit on, to help with this.
I do tend
to just sit through pain. It seems I’m sitting for too long on my sofa in one position
without getting up so I have now set a timer for every 15 minutes to make sure
when possible I get up. There is nothing we can do during a period, we just
have to work around that.
I need to
work out how long I can sit on other less comfortable chairs and keep a record of this. Then
make sure I get up and don’t just sit through the pain and suffer more later. Hopefully we are hoping to build my tolerance up to sitting . I
am really excited by this work, I know it’s only been a few days but already my
Pirifomis hasn’t kicked off this week so far which is amazing! Long may this
last. (Fingers crossed).
Anyway, the
pain team up at UCLH in my opinion are well worth a visit. They really
understand pain better than anybody I have seen so far. I’ll keep you updated.
Has anybody else seen them?
Lily Lou x
Hiya - just been catching up - you've had a busy time the last few weeks! Glad to hear you've been getting some advice about trying to conceive - that's great they're coming to your house to do the blood test :) Just wondered how you got on with the home ovulation kits? I find them so useful to know when to time sex... And apparently you should put your legs up for 30 minutes, but I'm not sure if that's a bit excessive...?!! We are managing ok with ttc, but no good news yet - we've been trying for 6 months now - seems like ages! It's so hard to be patient, but I'm doing my best...
ReplyDeleteI totally understand your frustration at living with an invisible illness - when someone says 'you're looking well' it drives me mad! I know they mean well, but I think, I may look well, but I feel like sh*t!! I suppose I deal with it like you - most of my friendsalso have invisible illnesses, be it mental or physical. I find hanging out with 'normal' people quite hard at times as they seem like they're from another planet! I don't really like telling people too much about what i go through as I think it makes them uncomfortable and not want to be around me. Sometimes I even like to pretend I'm 'normal' for a while,especially if I'm having a good day... Honestly, I think most people are just ignorant and well meaning - I know before I had ill health I would never have understood what it's like to be chronically ill. There are times when I've wished for a more conventional/recognisable illness too - one that the doctors know how to treat easily and other people will have heard of. Oh well, i try not to let their ignorance get me down too much - I've got enough other crap to deal with!!
On a more positive note, that's great the support you're getting from UCLH - I see some doctor's there for my condition and they really do seem to be cutting edge in whatever's going on in the medcial world as well as being personable too.. Wishing you lots of luck with the nerve block - I will be interested to see how you get on on with that... It's so great to see your perseverance and determination on trying to find ways through your illness and I'm sure one day you'll find a way to live if not pain free, then at least in much less pain, so when someone says you're looking well, what's going on out of sight in your body more or less matches up :) ... xxx
Dear Claire,
ReplyDeleteLovely to hear from you. I haven't tried the home ovulation kits, I have just been trying to either use the syringe or have sex from day 11 of my cycle. Which I have found incredibly difficult as I am still in pain. I have only been doing it since day 11 last month, Natasha Walters from the Royal Surrey told me to start then instead of later.
I take it the ovulation kit only tell you once you have ovulated. Natasha's suggests to try and have sex or use a syringe just before ovulation as the sperm stays alive in your body for up to 5 days. It could then be there at the right time to meet the egg. Maybe worth a go.
Thanks for the advice with the legs. I looked up fertility yoga positions and started putting my hips under a pillow and my legs up the wall and opening out my arms or laying with them face up which can open up the heart in yoga terms.
Its nice to feel that others understand isn't it and I'm glad its not just me with the invisible illness thing. But I will try and remember that people only are being nice when they say that. I used to say to myself that nobody understands and now I am saying to myself that some people understand. Its a nicer feeling.
Claire, Thank you for such kind words. I'm glad you are seeing somebody at UCLH as I only have good words to say about them. I hope that you get some rest from your illnesses and have some more good days and you are successful with TTC. Take Care and be kind to yourself.
Lily Lou x
Hi Lily Lou :)
ReplyDeleteJust wanted to comment on some of the things you said in your reply to my message. The ovulation kits actually warn you that ovulation is imminent, so a Positive on an ovulation kit would tell you you were likely to ovulate in about the next 24 - 36 hours, so it would be a really good way of timing sex/insemination.
The other things that struck me is that it would be so useful for you to understand more about your fertile time, so you don't have to have sex/inseminate so much and can just time it around ovulation. There are lots of ways you can be more in the know about your cycle and I really recommend a book called Taking Charge of Your Fertility by Toni Weschler. If you follow most or some of the ways of charting your fertility that she suggests in the book, then you may be able to pin your fertile time to around a few days a month, so would only need to inseminate maybe 2 - 3 times around that time. For example, because I am charting and using ovulation kits, I know that I am due to ovulate in the next 3 - 4 days, so I can time sex at the perfect time to catch my egg, without having to do it loads - the egg usually only lives for 8 - 12 hours so timing is pretty crucial and it it could also save you a lot of pain if you could pin point your ovulation more...
Anyway, just wanted to pass that on - I've become quite knowledgable about fertility over the last few months, so if you want to pick my brains about anything to do with trying to conceive, I'll do my best to help. Let me know what you think....
All the best
Claire xx
Hi Claire
ReplyDeleteSorry for the delay. How are you?
Thanks for your message, you really are knowledgeable about all of this.
Take Care
Lily Lou x