Does anyone suffer pain in the genital area?

I know it shouldn't really be discussed on an open forum like this but we are all on this site because we are in the same boat ! ..... Still trying to get my head around all the information my husband and I have gleaned about this wretched disease since I was finally diagnosed after 6 years of misery !! ..... I have come across a couple of references about acute pain in the pubic area in the past I thought it was because I must be putting on weight and my jeans were getting tight !!! The sexual side of or marriage is none existent and has been for the past couple of years, my husband is incredible and very supportive I am just so sad it has to be like this ..... Thoroughly fed up and miserable .... I don't really know what the long term prognosis will be and how debilitating Erythromelalgia will be on my body and sanity ?

I NEVER wear synthetics against any part of my skin !!

At present I can still wear shoes (leather or canvas) and 100% cotton socks in the summer and pure hand knitted wool in the winter .... I am between a rock and hard place as I have both Raynauds and Erythro between the two I cannot figure which is the most painful and which I should give precedence to? Keeping my feet /hands warm in the winter Or trying to cool the parts which are on fire!!

It has taken me over an hour to write this as my brain is fuzzy thank god for spell checkers I have all the letters in the word but in the wrong place ! .... I am on a low dose of Gabapentin which my Dr will increase gradually over the next few months, as I have never been comfortable with taking any kind of medication in the past. I am struggling with some of the side affects but am hopeful eventually when the get into my system I will reap the benefits ! ....

Just reading back through I sound like a moaning Myrtle ! ..... I have had some horrendous knock backs in life and always found the positive and come back out of my corner fighting ! .... This little lot has knocked the stuffing out of me to be honest .... We had some many plans for our retirement ... Now our children have families and homes of their own .... Just to sell up move to Thailand to relax and enjoy the rest of our years ..... I cannot think of anything worse now !! ..... The heat would drive me crazy !! .... So to plan B .... Not a clue ... I have no idea what shape I will be in 5 years from now .... How much medication I will be on .... Whether I will need a wheelchair or be housebound .... In the UK we have the national health system which I may/not be dependant on .... Who knows? ... How long is a piece of string ? lol

Sorry for twittering on but it feels good to write down all the things going through my head .... xx

Dearest Lesley anne,

Bless you.

I know how you are feeling . Intertestinal cystitis- i think its called. It is a very personal subject due to intimacy of area so I have sent you friend request if you feel like chatting about this. I am in UK.

God bless

mads x

Thank you dkel9307 ... I know the posting was a little brazen and maybe I shouldn't have been so open about something so personal but it's sheer desperation I have turned to those I know can relate to the problems we are facing .... I say we as my husband and I are both in this together .... We are as one .... Really lucky to have him ! xx

I am glad you posted, it took a lot of courage and I am thankful to you. Have you tried cold packs wrapped in a towel or something soft? This has helped me a great deal.

dkel9307 said:

Thanks cloudyskye - I trust things are getting better, or at least manageable, for you both. I have and rely on the wonderful support from my wife, so I know what you mean.

Thank you Marymonet for your support .... It's much appreciated .... Do you have a similar problem also? .... I have tried all manner of ideas for relief to be honest .... I have tried the cool packs wrapped in muslin but some times it's so painful I cannot bear any kind of contact at all .... It hurts to stand, sit, walk or lay down ..... Thoroughly miserable and fed up sometimes ..... This is a dreadful disease !

Cloudyskye, Google the condition pudendal neuralgia. This can sometimes be linked to EM.

Thanks Dave I will go and google it now .... Much appreciated xx

We have had a couple of members who get EM in their genital area, luckily I am not one of them but know that this post is invaluable to any members who are too shy to post. I would urge anybody who does suffer from these symptoms to reply, even if it's in a private message. It is great we have a place to ask for ideas, advice and just general chatting about ALL symptoms.! Well done you for putting this out there. There is another discussion that covers some of these issues on here which I will post a link to, also I know that Jacqui Kuschert has a daughter that also suffers with genital EM so she might be a good person to talk to.

My 8 year old daughter has Vulva,EM, CRPS, Hypermobility and most recently diagnosed with Intertestinal cystitis (IC) The doctors don't know if she was born with EM or if it developed after the IC started. Im happy to offer any advice:)

I have used Instillagel for the past 3 years and it is brilliant xx