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Could pain be caused by CP?

lozzer25lozzer25 Posts: 89Member Courageous
This discussion was created from comments split from: Hi, I'm Gill, I'm a full-time PSHE Specialist.

Replies

  • lozzer25lozzer25 Posts: 89Member Courageous
    Hello my name is Laura Smith I am 29 years I was finally diagnosed with spastic diplegia cerebral palsy when I was 25 i wanted to know does this affect sex I had a partner seven years ago and we have a ten year old son together initially the first time was painful but thereafter every time was the same my legs used to stiffen and everything would tighten making sex excruciating I haven't had sex for seven years I would like to know in your opinion whether my cerebral palsy is a factor in it I went to a gynacologist and he treated me like I was a moron I didn't know then about the cp I had a smear a 2 years ago and the doctor prescribed me diazepam to relax would this get better or always be the same?
  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    Hello Lozzer25, I have mixed CP & the same problem as you. I can't have a smear test, use tampons or have sex. All the muscles just seem far too tight. GP thinks it is related to my CP and offered to refer me for botox but the idea of needles down below put me off! I used to be able to have sex as a teenager with diazepam and lots of alcohol (not a good idea). As I've got older tho it's became impossible. It's put me off dating as I find it hard to explain to guys and get very frustrated and upset at not being able to have sex. Think I'm just going to be a lonely old spinster! Lol
  • lozzer25lozzer25 Posts: 89Member Courageous
    I can't use tampons either and the thought of having to go for another smear terrifies me :( I haven't been with anyone for seven years sex doesn't bother me I think I'm going to be a lonely old spinster as well I've never really asked my doctor about it well once she said the baclofen would help in that department I've never found out though I've tried myself but cant as its still excruciating my friends suggested getting a rabbit but that definitely wouldn't work either
  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    Hi Lozzer25, It might be worth discussing with your GP if it's in your best interests to have another smear test? After a long chat with my GP, I decided not to go for any more. My GP decribed my muscle tone like 'hitting a brick wall' and felt I would need complete sedation at day surgery which has risks attached to it. Not having sex doesn't bother me. I would like to meet a partner tho but I can't imagine someone wanting to be with me when we can't have sex. :-( It's been interesting to meet someone with same issue as me. I thought I was the only person in the world with this!
  • PSHEexpertPSHEexpert Posts: 168Volunteer community adviser Pioneering
    Hello Laura and Velvet Girl and thank you both for your questions and comments.

    I just wanted to let you know that I'm consulting some other professional contacts for their thoughts about the issues you've raised, as I'm not a medical professional.
    I will feed back their thoughts as soon as I get them :)

    Gill
    - Gill 
  • lozzer25lozzer25 Posts: 89Member Courageous
    edited September 2015
    Thank you velvet girl for your advice I really appreciate it :) it's nice to know that I am not the only one who has this problem x
  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    Hello Gill I'm just wondering if any of your contacts got back to you with information? I've recently joined Tinder but I'm finding guys run a mile when I tell them about my problem. I decided to tell my latest date before we met about it and he stood me up on Saturday texting to say that he felt he couldn't be with someone who couldn't have sex. I got this text in the pub whilst I was waiting for him to arrive. I'm feeling so down I'm off work today as I was worried I'd get upset if the girls at work asked how my date went. We all joined Tinder at the same time and they all have met nice guys via it. They keep asking why I haven't met someone but I'm too embarrassed to tell them the truth so just usually say I haven't heard back from the guy. I'm finding it hard to deal with that I'm probably going to be single for a long time as I'm at the age where friends are setting down and having kids and I would love that but I know from recent experience that I am unlikely to achieve this.
  • PSHEexpertPSHEexpert Posts: 168Volunteer community adviser Pioneering

    Hello there - and first off, I'm so sorry to hear about what happened with your date.  That's really miserable.  I hope you're feeling a bit better about it today, and if there's anything positive to be taken from it - at least he was honest, and you got to find out early on that he wasn't going to be much of a prospect if he couldn't even meet you to find out if you got on.  I know it's very small comfort indeed, but at least you didn't waste your time on someone whose view of relationships and intimacy is focused on whether they can achieve a certain kind of sex with their partner, and who was so disrespectful of your time.  There's SO much focus on penetrative sex as some kind of goal, and it's very misleading.  So: deep breaths.  I also think that Tinder (and the like) can be pretty punishing, just as an aside - there are some amazing folks out there, but to some extent there can be an element of depersonalisation, and having experienced it myself (along with other friends who have been doing the same thing), it can be very hurtful.  I didn't always disclose my disability and it was a very complex process.  I read an interesting final column just this week from a woman who had been using dating websites later in life and although her situation is very different from yours, and mine, it still had some good insights in it (particularly about how people act on such platforms), which you can read here: http://www.theguardian.com/lifeandstyle/2016/apr/02/from-oddballs-to-indiana-jones-my-online-search-for-love

    Anyway that's a complete aside - I did (eventually) get some responses from my contacts and I must apologise for the long delay.  There were various different professional backgrounds and all made the same disclaimer that without being able to carry out a consultation or examination, these are really speculative suggestions.  One of the ones that sounded most helpful was to see about finding a pelvic physiotherapist who specialises in working with problems (including spasms) in that area.  There were suggestions around exercises potentially with your own use of dilators, which I believe can be part of a treatment programme that is sometimes used for vaginismus/vulvodynia.  In this country, a psychosexual therapist would usually support women who experience this problem, and I know that in my local area, they are accessed through GU services.  There was also discussion around whether botox could provide any relief, as it has been used to treat leg spasm - maybe? - and also around whether timing any medication could help with reducing things, but I wasn't sure whether that was applicable to you.  I had some slightly more graphic/specific suggestions too but am slightly unsure as to whether I should post them here publicly.  Drop me a line at [email protected] so I can email them to you privately with a bit more of an explanation?

    - Gill 
  • bananapancakes99bananapancakes99 Posts: 4Member Listener
    Hi Gill and others. I was so relieved to read this post. I have this exact issue in that I can't use tampons or anything without being in excruciating pain. Very aware it could be the CP and if it is, I'm open to the fact that I will need to go through an acceptance process (as some on this thread have admirably done). I do have very tight muscles more generally. The thing is, other things have not been ruled out yet. I went to a GU service yesterday and they were incredibly patronising and said "you just need to accept it love" in such a condescending way. I more than accept this "acceptance" process if other conditions are ruled out, but health professionals are refusing to even investigate other causes. I went to the GU clinic after a similar experience with the GP.

    My questions:
    Gill, I noticed you are Midlands based as am I - do you know of any specialists whom others in similar situations have approached (from your college)? I appreciate you are not a medic, but if you don't ask eh? Would also love it if you could forward me the same email you sent to the person above?

    Thank you for this thread, it has been so useful!


  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    I'm in the same situation as you bananapancakes99 in that my GP asked me if I'd ever had forced sex or a traumatic sexual experience and when I said I hadn't she said she felt my tightness may be down to CP. The one reassuring thing my GP did say that it was unlikely to be a sign of cancer. If I ever have any pelvic pain or unusual bleeding or discharge then I've to go back to my GP and be referred to gynae day surgery for an examination under sedation. I really hope I don't ever need this!
    In a way I'm glad my GP hasn't referred me for further investigations as the thought of further examinations fills me with dread and I get really embarrassed talking about it.
    Have you asked your GP if you can get referred to gynae?
  • PSHEexpertPSHEexpert Posts: 168Volunteer community adviser Pioneering
    Hello!! First of all bananapancakes yes, course I will forward you that email - can you drop me a line at [email protected] so I've got your address please? Secondly, no, regarding specialists I have done direct local referrals for, but that's only because it hasn't come up specifically; I am more than happy to do some asking around and see if anyone's had experiences I don't know about! 

    I am really frustrated at the lack of understanding (and compassion, let's face it) that you and velvet girl have experienced.  It's just unacceptable that visits to professionals who should be supportive have resulted in these kinds of responses
    - Gill 
  • Eve53Eve53 Posts: 14Member Courageous
    This sounds a lot like me. On a related note, do you also get painful periods? 
  • bananapancakes99bananapancakes99 Posts: 4Member Listener
    Hi everyone.
    Thank you so much for all your replies. Finally feel like I'm getting somewhere!
    Velvetgirl, yes my GP asked me these exact same questions with the same outcome. Another GP also was prescribing me some other medication for an unrelated issue and said "I normally ask if people are pregnant before prescribing this, but that doesn't apply to disabled people like you does it." I was furious! So yes, I do need to get a referral to gynae but it's getting there in the first place!
    Hoping from this that I can arm myself with information so don't just get fobbed off when I go back. Gill, thanks so much, I've emailed you.

    Eve, no mine aren't painful but are incredibly heavy and difficult to manage being in a wheelchair. That is also making me think that other diagnoses need to be ruled out first.

    Thanks everyone (hopefully this gets through the moderators haha!)

    :)
  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    I don't have periods as I'm on the Pill which has stopped my menstrual cycle as I used to get severe pre menstrual headaches.
    Bananapancakes99 Could you try and get referred to gynae with heavy periods rather than gynae pain? I've managed to get an emergency neurology referral (GP's can be helpful sometimes) due an allergic reaction to my CP meds and will mention my vaginal tightness when I am there.
  • Fran1967Fran1967 Posts: 3Member Listener
    I think you would be better asking your neurologist..... even if it's a guy or a Neurio physio.... They are more likely to come up with an answer............... once they get over their embarasssment
  • lozzer25lozzer25 Posts: 89Member Courageous
    I have had psychosexual therapy and tried dilators does not make an ounce of difference I am hoping to get an appointment through for botox soon as me and my partner want another child hope this botox works want to be able to have a normal as much as it can and a spontaneous personal life 
  • PSHEexpertPSHEexpert Posts: 168Volunteer community adviser Pioneering
    Hello!  I've heard from some of the other folks at SHADA that botox can be really helpful - I hope it gives you some relief! 
    - Gill 
  • lozzer25lozzer25 Posts: 89Member Courageous
    Thank you it makes me feel inadequate as a woman it is supposed to be one of the most natural acts in the world making love with your partner but to me it is not possible without experiencing excruciating pain I can't even put a tampax in :(
  • the_velvet_girlthe_velvet_girl Posts: 103Member Courageous
    I hope your appointment for botox goes OK. Please let us know how you get on. How long will the botox last? I had a course of dilator therapy which meant I could have a swab taken without a speculum but it was still painful. I was only allowed the one course on the NHS.
  • lozzer25lozzer25 Posts: 89Member Courageous
    I don't have a clue I'm hoping it's the miracle cure:) been waiting since April for appointment still nor heard anything yet x
  • bananapancakes99bananapancakes99 Posts: 4Member Listener
    Yes, hope it goes well! Would love to know if you find it helpful x
  • lozzer25lozzer25 Posts: 89Member Courageous
    Thank you I will let you know xx
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