I am so EMBARRASED!

[Kara29]

I have a history of ovarian cysts but they usually don't bother me at all. I woke up this morning in Horrific Pain on my right hand side below my stoma. I was called into the Hospital. I had a cyst on the right ovary that burst and is leaking fluid. My OBGYN said that I should feel better in a week.

I am also having some really embarrassing pain due to a condition known as Clitodynia which is kind of a sister condition to Vestibulitis and PNE. It feel like a serious paper cut around the clitoris. I really did not want to discuss it but I am hoping that it could help others who may have it or have symptoms. I can not touch it, not even with underwear. I have to lie still and pray for it to end. I 've been having severe symptoms as with most of my other diseases right around ovulation and period time. Ice and Lidocane are being used along with Lyrica and Fentanyl (not much relief).

I am so embarrassed. It is at times like this that I thank God Every Second for my Disability. And for a wonderful Husband! I could not do this journey without him.

Kara

[ihurttoo]

Wow! I am sorry you have been having all that pain and had to go to the hospital. At least they found out what it was and hopefully, you will start to feel better now.

Please dont be embarrassed about the other. It is just a body part, like any other. To the OB/GYNs, it is just like seeing your toe would be to a Podiatrist. No big deal to them! I know it is hard to think of it like that, but it helps to know that's how they think of it.

I hope that your surgeries will help you alot and you will finally be able to reclaim your life.

Love and hugs,
Amy

[leelee88]

I agree with Amy on that Kara, dont be embaressed.. You mentioned Clitordynia, well that is what my GYN said I had, I dont have the pain all the time but when I do I cannot even wear panties all I can do is lay on the bed sprawed out... Its awful, I am so sorry you are going through this along with everything else, It just does not seem fair.. (((((((((((((hugs))))))))))

Ronda

[humpieumpumkin]

Dont be embarassed Kara!

You have been through so much, it bothers me deeply to see you are still suffering. I also have problems with my clitorous. It gets a twitchy aroused feeling one in a while that drives me bonkers! I hope you feel better soon, and the decompression surgery is successful!

Erika:hi:

[Berkshire Road]

Oh, Kara, it's nothing to be embarassed about. But I know how sensitive you are and that you actually are embarassed, so I just want to say, it was very brave and very generous to share that on the boards, in case it might help someone else.

[Mel53H]

Please don't be embarrased!:grouphug:

[ICNDonna]

:grouphug: I hope tomorrow is better for you.

Donna

[SharonA]

Kara...Sending you (((hugs))) and lots of prayers.

[stac7_8]

Please don't be embarrased....it is people like you that have helped so many others. I thank god for this website every day and for everyone on here that replies to messages and posts them.

It was very brave of you and I hope u feel better soon. Take care:angel: :smile tee

[Moonheart]

I have that as well and it's miserable, as well as the unwanted arousal that nothing really takes away. I've considered a female circumcision at times, but I probably couldn't get that. (Could I?)

I hope you feel better. It seems like some of us just keep suffering without relief and it's hard to understand why. I couldn't make it without my God either.

[Kara29]

I feel like its time to say that I am just broken from "THE WAIST DOWN". Each time we seem to be coming to some conclusions as to what is happening and how to treat it, something else comes up "DOWN" there.

:rolleyes: :rolleyes:

At least we are all in this together and we can help each other.

Kara

[Moonheart]

Yeah, I'm thinking from the neck down. *pout*

Uh oh. I've got a pity party coming on! Darnit. I'd better go make a pot o comfort food. :D

[sandramac]

:smile tee Sending you 'hugs & kisses.
Sandra & family :cat: :cat: :cat:

[Bianchi]

Klara, when I had it, about a year ago. I finally turned on a fan and pointed it in a certain direction to hit directly, while laying on the bed. It seemed to give me some relief. I feel for you, you have been through so much and you're so young. Hope you're feeling better tomorrow.
Take care,
Bianchi

[Kara29]

I have talked with one of my Doctors regarding this. Clitorodynia is as a direct result of Pudendal Nerve Entrapment (PNE). The only "cure" for it is Pudendal Nerve Decompression Surgery. This is extremely controversial and only done in 3 places in the US.

The dilema is that I have PNE with Vestibulodynia and have to have both surgeries. The Surgeon that is closest to me does not do PNE Decompression. The Surgeon that is far from me and also the most qualified Specialists to take care of me, does both Surgeries at once. The Surgery and Hospital stay is covered by my insurance. It's the lodging. I would be staying in the Hospital for a week and then have to stay locally for another week.

I am so close and have found some answers that for 10 years have been unknown so I guess I should be grateful for that.

I am pretty distessed about this. I'm in so much pain I am thinking about risking my Disability to find a job (standing up) so I can save up. I know this is irrational and probably not logical. I would probably lose more money in the long run if I do this, not to mention the loss of my Disability. It also took me 3years to get the Disability and is something I wish not to repeat.

I'm trying to reason this out in my head but I am having so much trouble....

I needed to talk to someone. My Mom just went out on her own Disability for her Cancer so our family is not as stable as we were.


Kara

[leelee88]

Kara.. I think you are just thinking ahead.. Try not to do that because it will only depress you more..A job would only make things worse on you and you could be jeopardizing your disibility.. Take a big breath and rethink all what you are saying...((((((((((hugs)))))))))))

Ronda

[Moonheart]

I was told you can try to work for a year without fear of losing disability. Also, you are allowed to earn up to $800 or so above your disability? Is that right?

[akrose]

Kara- I am in the same predicament as you are. I haveto fly from VA. to L.A. for the best urologist in the u.s. to do my cysto/urethrectomy. Stay in the hospital -UCLA for 1 wk, then at about $100 per night stay inthe hotel across from the hospital for 3 wks, then fly home. Thank the Lord that he is covered by my health insurance, but everything else I have to pay for. But because I am very sure that this will be the end of i.c. for me, I am very willing and ready to do it, and have saved and worked as hard as I can to do this. So just think about the life (a better one) you can have after this is over and the surgeon has repaired you. Just trying to support you, this is all very hard. The advantage you have is a husband, parents, siblings who care about you. I have the Lord and a few friends, nothing else. But I believe help will come. your friend, Aileen

[ChrissySunshine]

Hi Kara, I'm so sorry to hear you have yet another symptom....I know what you mean....that's why you're moderator of this "complex cases" section, right? :wink: Yours is for sure a complex case, and if you think of it, everything IS connected really...

Regarding working, personally, if you can get by without it for now, I would wait, you have soooo much going on! Plus, you'll have to be out for a while with your surgeries.

I just got a part time job (probably only under 10 hours to start) a standing up job as a Sales Associate. I'm hoping and praying first of all that I am ABLE to do it, and secondly that it does not affect my disability claim....but they DID tell me that you ARE allowed to make up to $860 per month and still be considered eligible. Seeing as you're already on disability, if you feel you really, really HAVE to work, it shouldn't (?) affect your disability much...but I just don't know!! :confused:

I hope you're feeling a bit better today, I'm gonna give you a call this weekend when my minutes are free. I love you and pray for you (and all of us) every day!

Love, Chris :kissing:

[tj3383]

You should post the cities/locations you are looking at for surgery. Who knows, maybe someone has a vacation home or mother-in-law apartment not in use.

[Bessie]

Hi Kara,
If your surgeon is in Houston you can stay with me.....I am serious. Please let me know.

[Kara29]

The Surgeon is in New Hampshire. (Nashua/Manchester)

[ihurttoo]

I know that you know that there is no way you could possibly work in your condition. It is just one of those irrational thoughts that comes in our heads sometimes when we want to do something to help, but dont know what. But, you and I both know, working isnt it!

HOWEVER, AFTER your surgery and recovery, who knows?!! You may feel so much better that you actually might be able to go back to work part-time for a while and if that goes well, who knows, you may be able to go back full-time after that! It is of course, just hard to say how far reaching the PNE and VV is, until after your surgery. It may be much more far reaching than you or your Drs. ever realized. And if that's the case, you may recover and feel better afterwards than you ever dreamed possible! :)

Right now, you only have to take a minute at a time, an hour at a time, and a day at a time. I know that's what you have been doing, but that's also what you have to keep on doing until this surgery and recovery are behind you. If there are still other issues to deal with after that, then we will deal with them as they occur. But right now, you have SO much hope that you havent had for a LONG time! You have been waiting for YEARS to even get the PNE, VV, and Clitordynia d/xed, and then, waiting and waiting for this surgery. I really, truly believe that you are going to be helped more than you can even imagine by this surgery! So, please just hold on a little longer.....you are almost there! :)

I hope that the minutes, hours, and days start passing more quickly until it is time for your surgery!

Sending love and hugs,
Amy

P.S. Octoberfarm, that was so very nice of you to offer her a place to stay in Houston (if her surgery was there.) Not many people would do that for someone that they had never met. You really have a big heart! Though her surgery is taking place elsewhere, your offer was very kind. Though her surgeon is in NH, I think one of the other 2 Drs in the US that do this surgery IS in Houston! So, if for some reason things dont work out for NH, it is good to know that she has that option. I know we would ALL feel better knowing she was with one of "the family". Again, that was very, very nice of you to offer! Hugs to you, Amy

[TexasHoney]

:grouphug: Kara, I am sorry to hear you are having such a rough time. I know you have had more than your share of troubles. It does't seem fair. I hope you start feeling better soon. I will keep you in my prayers.

Hang In There
TexasHoney

[ICLori]

Kara, I'm so sorry you are still in so much pain - you need this surgery so much, and you are so brave for pursuing it. I wish I knew someone in New Hampshire or had a place there. I feel so bad that you are having this worry about how to pay for the hotel stay, on top of everything else. :( I hope things will work out okay and that you won't have to work or anything or risk your disability benefits.

Blessings,
Lori

[sandramac]

:smile tee One door closes, another will open!
Love you Sandra :cat: :cat: :cat:

[MakinIT]

Kara

I feel awful for you..you must be in so much discomfort to say the least, I've had my own days where I've laid sprawled on the bed with the fan pointed my way...

I was looking at SS and going back to work, just their rules, b/c i am going nutz. In reality, if i sit at a desk I will be found unconcious and drooling but if I am moving I will do ok. I get so depressed b/c i have all this education but can't do anything with it. And, I'm ADHD with drug brought on narcolepsy...how's that for irony? Anyway...from my reading and what they do to encourage you to work is allow you to work (with pay) for a year without losing your benefits or medicare. After 9-12 months they cut your beni check/medicare...but if within 5 years you have any problems related to the original reason you were put on SSDI you go right back on. THAT is my understanding. Of course...the government reinterrupts stuff like an art critic at an abstract art show...one person will tell you one thing about the rule, another will tell you his interpretation. (you generally get stuck with the ****tiy interpretation..'oops bad word and bad spelling) Anyway read on the website and look at their ticket to work program...personally, that doesn't flip my dress up. the jobs look like entry level envelope licking but they are supposed to have vocational people to help you match your skills and abilities.

Again...sorry you hurt. Thanks for being so helpful to me. I just ache inside, as usual...husband and I got to go away for an entire 2 nights this weekend (first time in 10 years) and made up for it in, well, intimacy....lets just say I needed W-D 40 and a lot of talking between the two of us as to what our problems have been. It has been 3 years since we last tried this. I feel as if I have been riding bareback....naked. and everyonce in while a thorn got through. Not saying it was bad, but I am paying now. We went to an art show in Seattle yesterday and were going to go to the Music Experience and Pike Place Public Market (home of the original Starbucks....Every caffiene addict's holy shrine) however we've been there before...went to rest in hotel and well... left when we had to check out today. So my, uh, clitoral area has an ice pack and a fan blowing as I type, and a heating pad over my belly. Poor hubby, worries the entire time he is hurting me...if I even make a noise that slightly sounds owieish he stops.

Kara..You've been so kind to everyone else on this board and helpful...I guess maybe I told you about that to try to make you smile a little.. I hope i did. We are all in pain, some worse than others...you've got it bad. I can't even imagine a paper cut on my clitoris. I would be sobbing. My husband would havee to commit me. I admire your bravery and nonchalance with this!

Tracey

[stac7_8]

I know right now u feel lost due to the money end of it...and I would too. But do you belong to a church or do u have close friends???

I only ask cause maybe they could start a fund raiser for you. Find out how much your lodging would be and then figure in food and whatever else u would need and go from there.

I mean it is alot better than losing your disablility....maybe u or a friend could call the local paper.

It's worth a try...and if don't try then u will never know.

The other thing is do u have any family....or does any of your family have friends that live whereever this DR is?? I know it might be strange to stay with a stranger but if that person knows that other person and says they are good people....u might find a place to stay for free.

Just a thought....I would hate to see you not be able to get the help that u need.

Also depending on where this DR is....see if someone has a timeshare close by. If someone does then u would only have to pay for that and it can be free to very little in the price....I used to have one.

See if any friends have any "points" on the their credit cards and if they would get a room with their "points"

Those are the only ideas that I have. Sorry I don't have more.

Many hugs coming to u. Take care and keep us posted

[kjd]

Kara

I have these exact symptoms and I am just starting lycria. Its horrible isnt it but you are not alone.

i have been suffering with clitodyina for 2 years now
x

[Kara29]

I will take everything you all suggested in and try to find a way to do this without losing my Disability. Thank You all for caring so much about me and lending some very helpful support and ideas.

You are all in my heart and prayers.

Love and Hugs to you!

Kara:angel:

[Bessie]

Amy,

That was so sweet of you to say those things :)
I really did mean it. I know how expensive it can be going to a doctor in another state. The cost of the airfare, car rental, food, and hotel.......whew that is just too much to deal with on top of everything else. I would think of it as an honor to help out. Kara has dealt with so much so if I could do one little thing to help her out I would feel blessed to be able to do so. I feel that way about any of us here dealing with this dreadful disease. We really need each other and God has blessed me with some great friends here. You are also one of the kindest and sweetest on the board. I always love the way you treat people with such kindness and respect. You have a very nuturing and sweet soul. You are very much appreciated :angel:

[MakinIT]

Kara:

I wish I could write more 2 U but I am zombiemibied/ We love ya,let us know what can help...I like the unused dollar idea b/c many people havd a
small unusable amount on their cardsk but if uou take that to the store they will load it allonto one. (people did that for me when I first became ilL)

I out night y, night

Tracey

[chantal nicole]

Did someone say they need help with air transportation for medical reasons? If so, you might want to check these out.


US Medical Transport:
MMA Mercy Medical Airlift Charitable Air Transportation1-888-675-1405, Mercy Medical Airlift (MMA) is a nonprofit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants.

Angel Flights
Angel Flights is a volunteer corps of private pilots and "Earth Angels" who combine a love of flying with the spirit of grassroots volunteerism by flying patients and their families to the critical health care they need. Their mission is to ensure that no patient in need is denied access to distant specialized medical evaluation, diagnosis, treatment, or rehabilitation for lack of a means of long-distance medical air transportation.

Angel Flight NE: As far north as Maine, as far west as Minnesota and as far south as Florida and Louisiana. Into Eastern Canada occasionally:
Angel Flight Westcovers flights originating in the Western States: Alaska, Arizona, California, Colorado, Idaho, Hawaii, Montana, New Mexico, Nevada, Oregon, Utah, Washington, Wyoming
Angel Flight Central: Midwestern States
Angel Flight Central: Texas, Oklahoma, Arkansas, Louisiana, New Mexico, Mississippi and Tennessee.
Angel Flight Mid-Atlantic: District of Columbia, Delaware, Kentucky, Maryland, Michigan, North Carolina, Ohio, Pennsylvania, Tennessee, Virginia and West Virginia.
Angel Flights Southeast: South Carolina, Florida, Alabama, Georgia, Florida, some parts of Louisiana.

*For the links, go to: http://hkpp.org/general/ppresources.html Scroll to the bottom for USA.

[MakinIT]

That's another great resoursce...Does anyone know the rules about Ron. MacDonald houses? I mean...like I know they are for families of sick patients but I don't know if that is just sick kids, or would include a sick patient who is from out of town but has to stay close to go back and forth after surgery and release? I know in Portland they have some facilities, not sure if it is Ron. Mc Donald for Long term out of the area patients and their families. Like apartments, and they pay just a small deposit...paid for by donations and grants.

Maybe you could check with that hospital and see if they have any of that kind of housing?

[blueeyes46]

Kara we were recently out of state for our dads surgery and I called the local hotels about giving a discount for our family. We got it too and it was very reasonable. I am also a Travel Agent and have resources I may be able to use to get you a great rate!

PM me and will try my hardest to help you!!!

[chantal nicole]

Um, i know this sounds odd but try a convent. In Montreal Québec i stayed in a convent. They had a whole floor just for hospital patients. I only paid 30$ per night and we were two- breakfast was included and we had access to fridge and drinks, we could also get very cheap meals, plus lots of emotional support. I had this in London ontario too but they sold the convent. They even had an indoor pool but i hadn't brought my swim suit- i paid 12$ per night in London. Ok, you have to go down the hall to pee but it's much safer feeling than a youth hostel, very clean, very friendly and supportive if you want it to be. No tv in your room but there was a big screen tv just down the hallway with cable, dvd, movies, board games, puzzles, other people to socialize with if you feel like it...

Chantal

[Kara29]

These are all great ideas that I will have to check into. I am not going to schedule surgery until I can afford it. So far I'm planning on doing this while on Disability. Thank you all for being such WONDERFUL support. I could not do any of this without you.

Warm Hugs!!!

Kara:angel:

[ICNDonna]

Another thought: If you contact the Social Services Department at the hospital where you'll be treated, they may have some information about resources in the area.

Donna

[NicoleB]

I live in Nashua NH!!!

if you need a place to stay, i could see about that. its not my place, but i have a nice roomate ;) and a really nice dog and cat to annoy you!

[Kara29]

Nicole,

I have PM'd you back.

Kara

[mom_in_ma]

Kara,
I've found amazing hotel deals at sites like priceline.com. I know it's not free, but it could be fairly cheap.

[Kara29]

My Doctor is going to look into some way of getting a better deal at the local hotels around the hospital. I have one surgery first to get through. If that surgery doesn't help then I am off to NH.

Thanks for all of your continued love and support and great suggestions!

Kara

[Ginny]

I'm sorry you are having such a hard time. I did not read the tread until now.
There is no reason to be embrassed but I know the feeling. I feel that way with IC. I hate telling people it's my bladder. I shouldn't but I do.

Wish I could help. All I can say is don't be embrassed here.

Ginny

[Annie2]

Kara,

I haven't been on the boards much at all the past few months as I, too, have been having problems. I just saw this post. We had a summer home in NH about 1 1/2 hours north of Manchester (not terribly close, but not a horrible commute, either), but sold it this spring. If we still had the house, I'd certainly do all I could to help. We may purchase a new place in NH in the future, but it won't be for another year or so. Keep me in mind for future reference should this be delayed or you have future need. In the meantime, please know my thoughts and prayers are with you.

:grouphug:

[Kara29]

Dear Annie,

I may not be having the pudendal nerve surgery for another year so it may just work out that we meet. I have to have one other surgery before the PNE Surgery happens in NH.

I will keep you posted! Shucks about your summer home.

Kara

[aprilchen]

Kara,

You are always SO compassionate to everyone and listen/read about our problems so well. You should be a counselor out of this. You are doing so well at answering others' questions and concerns. God gave you a wonderful gift, Kara!

[Kara29]

Thank you April,

That was very nice of you to say! You kind words are very uplifting today!:smile tee

Hugs to you!

Kara

[sandymarie]

When my son and DIL had their first child, the baby had to stay in the hospital for over a week. They were moved a time or two while they stayed from one room to the other. The hospital said that if they had a charity room empty they would let them stay in it for a short while until the baby got ok to go home. Maybe if you would talk to the hospital administrator, they would consider doing that for you. It really would be worth a try. Most hospitals have charity rooms for people without insurance. Hopefully one might would be vacant for you if you let them know your circumstances. Just a thought. This is the only time I have ever heard of it, but you wouldn't know unless you asked.

Hope your surgeries go well. My prayers are with you.

JJ:smile tee

[peaceplease]

Oh, so there is a name for this which I just found on the web. I have IC and vulvodynia and in the last few days a CONSTANT throbbing and VERY unwanted sexually stimulated feeling in my clitoris. I am SO embarrased about this and was hesitant to post. Does any body have any history of this or treatment success in getting rid of it. Is it FOR sure caused solely by Pudendal Nerve issues? I read on a previous post on this thread that the only way to get rid of it is surgery. That really made my heart sink!!!
Is there any way that really good pelvic floor Physical Therapy where they work internally etc could help?
It is the WORST feeling, like an unwanted arousal all the time. I feel disgusting inside! :help:

Medications:
Elavil 30mg at bedtime, clearly not helping my Vulvodynia.....

[wolfaleena]

sorry you guys are having to deal with this.
sending prayers and positive energy your way.

[Kara29]

Those sound very similar to Pudendal Nerve Symptoms.....................................

Check out the sticky attached to the front of the Pudendal Nerve Condition page.

Here’s a Comprehensive Website that gives you Everything you wanted to know about (PN), Pudendal Neuralgia (PN), or Pudendal Nerve Entrapment (PNE) from what it is, some Facts and Questions from patients, what the symptoms are, diagnosis, treatment Options, for example it goes into detail regarding such topics: Lifestyle changes, Medication Management, Physical Therapy, Botox, Pudendal Nerve Blocks, Pudendal Nerve Decompression Surgery, Neuromodulation and information about the Intrathecal Pain Pump. The site even talks about Emotional Aspects that go along with having PN/PNE, the Anatomy of the Pudendal Nerve, Related Conditions that have very similar Symptoms to IC, A List of North American Doctors who diagnose and treat PN/PNE, a list of Physical Therapists who treat it, Personal PN/PNE Stories, and even a Pain Scale. The link to this website is as follows:
http://www.pudendalhelp.com/home.html


Thank You to the Doctors and Administrators who put this site together.It is to them that I owe the greatest gratitude for putting it up on the web for all Chronic Pelvic Pain Sufferers to view. I have used it in a forum that is just learning about PNE/PN as it has become increasingly similar to those of us that also have Interstitial Cystitis. Thank you for putting together such a comprehensive site. It’s a lot of information but it could save an IC person from getting their bladders removed which is very drastic and in my case as well as many others, we may not have known what caused the pain because it was so close to the bladder that Doctors had and currently have trouble not seeing other possibilities for the their patients. I want to bring this to the table and forefront so that they all take one more step before drastic operations. This is meant for patients and doctors to start discussing this disease together as a team.

So take a look and print out any information you feel may help you and your doctors in your quest for pain reduction.


You are NOT ALONE! I had similar symptoms and had the PNE Decompression Operation in May. I've gained the ability to sit for 4 hours at a time on a good day as well as reduced clitoral symptoms and most recently a reduced pain upon having a bowel movement. I did a lot of research before having this surgery and I'm grateful that I did the research because it has saved me from worsening symptoms. It takes up to 2 year to heal from this surgery so the results are slow to come. It takes a lot of patience and will to keep going. I am on month number 8. I pray for continued relief of other PNE symptoms and pain relief for my future. ONE DAY AT A TIME!!!!!!!!! ONE HOUR AT A TIME!!!

Kara:hi: