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Vulvadynia
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debwen2153 posted:
Does anyone suffer from this? I am 58 and was diagnosed 14 years ago. After going to Mayo Clinic (after several years of visiting I don't know how many doctors, tests, physical therapy and a support group) I gave up. I look at latest research on Vulvadynia association but never anything new. I've also tried many medications and nerve block with no relief, so I live with pain daily. I take Lexapro (works best for me, stops me from crying all the time) but most days I just want to die so the pain ends. I don't even know why I am posting here, I guess hoping for miracle. Since my pain is "invisible" my family, friends have no idea what I live with, I guess that's normal, until you have experienced you don't have a clue. Thank God my husband accepts what I live with, not much more he could do.
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Caprice_WebMD_Staff responded:
Hi Debwen and welcome to WebMD,

I'm sorry to hear that all the approaches you have tried so far haven't been helpful to you. Are you still doing PT for it and/or seeing a therapist who understands this?

While you're waiting for responses here, try also posting on our Women's Health Community .
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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1wareaglefan responded:
Deb, I'm so sorry you're dealing with this! I've only read about it, because I have fibromyalgia, and it's always mentioned in the fibro books as a possible symptom.

I agree...maybe post on the women's health board. Maybe someone there has it also. I hope and pray you're able to find something to help you very soon. How awful that you deal with that and nobody knows how you're suffering.

I'm praying for you......Elizabeth
 
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annette030 responded:
Most chronic pain is invisible, we just don't have broken bones to show people that is all.

I don't have what you have, I have my own invisible pain, but I would continue to do your own research and look for new treatments. Do you see a doctor for the vulvadynia pain? If not, I would. Or a pain management specialist who offers oral meds, physical therapy, biofeedback, CBT, etc. in addition to other modalities. I would not see just an interventionalist who just does shots and procedures, but rather a doctor who offers you everything that might help.

Be happy for your husband, I am. Spouses can leave, they do not have to accept what we live with.

I hope to see you again soon.

Take care, Annette
 
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An_223863 replied to Caprice_WebMD_Staff's response:
Thank you for your reply, I am receiving no treatment except for Lexapro from my doctor, I've exhausted all my options. I will post on the women's forum. FYI, I just got a notice tonight I had a reply.

Debbie
 
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debwen2153 replied to 1wareaglefan's response:
Thank you Elizabeth, I was told by one doctor he thought I had Fibromyalgia, I don't think so from everything I read on that, but that is a difficult diagnosis too. Honestly I live one day at a time, you know the pain scale, some days better than others. If I can have one or two days a week under a four I can enjoy the simple pleasures of life. We are waiting for our first grandchild due Sept 11, and that has given me something to look forward to. On days like today tho I can't get off the couch. As you know, this has taken over my life, my memory and ability to concentrate. TY again and take care. Blessings, Debbie
 
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debwen2153 replied to annette030's response:
I have seen many MD's and three Vulvadynia specialist (there aren't many out there, and most doctors never heard of it). I have tried everything they all advised except for one that suggested surgery, removing the Bartholomu (sp) glands, which I opted out after researching and getting feedback from patients who had this done (through my support network). I do thank God for my husband, I know this hasn't been easy on him, and he just had unexpected triple bypass in Jan. Thank God for heart scans. Take care too, Debbie
 
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annette030 replied to debwen2153's response:
I would just stick with whatever doctor made you feel most comfortable. Toiuch base with him/her periodically to see if they have come across anything new, treatment wise.

Every woman has two Bartholin glands, one on either side of the vaginal opening. I don't know if surgery is the answer for you, I don't know how removing two healthy glands would help with your problem, but if they have been contributing to your pain that would be something else again.

Take care, Annette
 
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nesting54 responded:
Just read this after searching for some answers to the same problem.
I understand how hard it is. I live with this everyday, just different degrees of pain. So many time I just don't want to have to go anywhere where I have to sit because it's so uncomfortable. I feel like I'm going to always have this. Someone did suggest a conncetion, for them, with acid in her GI and is taking galvascon before she eats. I might try that. I also have a husband that is understanding but I feel so badly, especially since it is so uncomfortable to have sex.
If you've found out anything else I would love to know.I plan on calling my doc. back. She is at Yale New Haven in Ct.
 
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nesting54 replied to annette030's response:
Such good advice.
I am also suffering with the same issues and have been to several doctors. What do you mean by an interventionalist?Sometimes I feel that it is going to be a part of my life and it will define how I live my life and choices that I make.I don't want pain to be that powerful, but it seems to take over when it is so constant.
 
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annette030 replied to nesting54's response:
An interventionalist is a pain management doctor who uses injections, and/or invasive procedures to manage pain.

He generally does not use other treatment modalities like PT, OT, cognitive behavioral therapy, oral meds, heat, massage, etc.

I personally feel that any relief that one gets from a variety of treatment modalities is a good thing, and when you add them all together they may provide decent relief.

I do not allow my pain to define who I am, or make me "suffer", it is just a small part of my life. Thank goodness for my pcp, she works with me to manage my pain.

Take care, Annette
 
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cybil53 responded:
Hi debwen2153,

I am so sorry to hear you aren't getting any relief. I also have vulvadynia and Interstitual Cystitis, I know the pain very well. I went to a womens center for physical therapy they use dialators and put me on vaginal valuim. The valuim has worked wonders for me maybe you could check into that if you haven't tried it. I use regular valuim tablets and insert them vaginally at bedtime, they also have vaginal suppositories.

I am lucky I have a patient husband also, not saying it is easy for him but he is pretty good. Well I just wanted to share what I am using in case in may work for you. I wish you well and hopefully some relief! Take Care,
Cybil


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