Hello, I was diagnosed with MS around 2 years ago at the age of 20, although I had been suffering with symptoms from the age of 18. Recently due to the heat I have been feeling very unwell - nauseous, dizzy, tight-chested and generally exhausted. I am wondering if anyone else suffers from these things in the heat. I have looked it up and read forums full of people going through this but felt it would be nice to speak to people myself! As well as this, and on a completely different note, I have been suffering from painful intercourse (sorry to just come out and say it!) but I’m a woman and am wondering if anybody else has suffered from this and will it last? I’ve read up about spasticity and I feel this may be it. Penetration has become very painful, almost impossible! Feels like I have shrunk. It would be nice to hear from some ladies who have been through similar situations? I’m slightly worried and its too awkward a thing to ask my neurologist! Thank you all, any comments are welcome!
Firstly yeah the heat is a swine ain’t it!? I’m coming to the end of a relapse at the moment and the heat has definately been making my life hellish just been sat about in my underwear with a fan on and can’t make ice cubes quick enough!!
Two weeks before I got my dx (Oct 2012) I was in Egypt and I didn’t know what was going on, I been there a few times and never experienced anything like it before! I could barely walk, was going to bed at 7:30pm etc etc. Since dx I’ve made the decision that if I go back there then it’s gonna be a winter holiday!!
On the other issue, I have also suffered the same. But don’t know if spasticity is the cause as it happened along time ago. the probelms I have are being ready(if you know what I mean) so I use lube, but the worst thing is lack of feeling and numbness in the important areas. This doesn’t happen all the time sort of comes and goes, actually worse in the heat!! It is an awkward thing to talk about but maybe a call to the helpline would make sense(number at the bottom of the page) at least it’s not face to face and that might make you feel more comfortable dicussing it.
Do you have a MS nurse? If you don’t want to bring it up with Neuro might be another source of info on the subject. Please don’t leave it because you’re embarrassed, it’s the kind of thing that can rule your life and make relationships difficult when it really doesn’t have to. These boards are good people seem to talk about anything and everything so you’re not alone.
Hope I’ve helped in some way
Take care and keep cool
Hi Becky, Thanks so much for your reply, you’re help is appreciated! I initially thought I was coming down with something and it was only after speaking to my dad about it that he suggested it was probably the ms. It’s very nice to hear from someone who has been through the same kind of things, I think as hard as people try, it’s difficult to understand how it feels unless they have ms themself. I find it hard to explain some of the feelings I get, especially the dizziness. I say for me it feels as though I am really big and everything looks small or wavy. Like the steps I take are really big but it is hard to explain it! I read an article and the woman was saying she finds it difficult to describe too. As for the tightness, I do have two ms nurses who are very lovely so I guess I will just have to swallow my embarrassment and tell them. Maybe they can help. Your suggestions were very handy and I will definitely give them a try. It is comforting to know that your problems went away and I’m keeping my fingers crossed that mine will too! Thanks again Becky! Kirsty x
Do it, take a deep breath and talk to nurses. They’ve probably heard it all before(and worse) anyway!!
Again I’m going to stress you’re not alone in this and I think it’s an important part of everyones life that people just don’t wish to talk about.
This might be worth looking at if you haven’t already http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/sexual-problems/sex-and-relationships
I can’t comment on your problem as I’ve not had that experience but I was a nurse and midwife and I can tell you that you can speak to them without it becoming uncomfortable. I’ve been asked some very strange things over the years and believe me, your questions concerning sex won’t bother them in the slightest. Just ask them, they will have experience in dealing with all aspects of ms and I’m sure you’re not alone with your problems.
Hi Min, thanks for your reply! That’s good to hear! Whenever I have an embarrassing problem I always think to myself ‘I’m sure they’ve had worse, I’m sure they’ve had worse!’ Lol. Hopefully they an help me if I ask them about it, not sure what but I’m guessing, after doing some research, that its not an uncommon problem among ms patients. Thanks!
Believe me, it’s really difficult to broach any personal matter that they haven’t been asked about before and with ms usually being diagnosed in younger people, sexual problems will be reasonably common. Another thing that should make it easier for you is that they have to respect your privacy, they have a strict code of conduct and whatever you tell or ask them remains confidential. I’ve always been very private and my dignity has been compromised a good number of times since I became ill and that’s what has kept me going.
Take care and don’t sit and stew over embarrassing matters, that’s coming from someone who was a nurse and now has to cope with being the patient. I don’t have a lot of experience of ms so like you I have to ask.
Good to hear from you Cath, it’s nice to hear from your perspective, knowing you have experienced both sides of the situation. It’s always nice to know that it’s not entirely uncommon and that they have possibly dealt with something similar before. I hope I can speak to them and maybe they will be able to suggest some things for me. I will speak to them about them next time I see them, I’m sure they won’t find it strange or awkward like I have been feeling. :-S x