Need Help Please

Submitted by kit on October 14, 2007 - 7:26am
Body: 

This is my first posting, and not the way I intended it to be. Life has really come at me hard these past few weeks. I had a very bad head cold and cough. Two weeks into the cough my urethacele started itching inside. This is the first time that has ever happened. Now for a week I have alternated itching, burning, just in that one area. It makes me shake it is so bad and I get the chills. It is not a usual itch, but feels like it’s hitting a nerve or something. That is probably just due to the area of the itch. When I urinate the urine feels very hot on my skin. I can relive the itching, burning sometimes with baths but only for a few hours at a time. Sometimes the baths don't work at all. I have also slept with ice packs but they don't help a lot either. Now, it has gone from just bothering me a few hours at a time to almost constantly. I am also very queasy and cannot eat. I have to force myself to eat anything. Food and drink have an off taste. I cannot emphasize how miserable I am.

I have had many, many UTI’s in the past. It is not my urethra that is itching/burning, but the bulge instead. I really do not think I have a UTI.

I ordered the book and the balms in anticipation of doing the exercises. I did start the exercises a few days before the cold hit. I tried the vulva and bliss balms on the irritation but they made it worse. On other areas they feel wonderful.

Please, if anybody knows what I can bath in or use to relieve this agony I would be forever grateful. I cannot go on like this. I am in tears and my husband is out of his mind with worry.

I don't want to go to the doctor in this kind of pain. The exam would be excruciating and surgery would most definitely be pushed.

I was managing pretty well before the cold and cough hit. I know things are now worse. I can feel it more. Now my stomach has some mild pain when I lie in bed.

Please, any advice you have I will be most grateful. I cannot believe I am in this condition. Love and care to all, Kit

granolamom

October 14, 2007 - 9:47am

(((kit)))

your symptoms sound like they *could be something that needs medical attention. I know the visit is likely to HURT, but the memories of my recent kidney infection are still vivid. could be you are right and its not a UTI, but what if you are wrong? these things can get so bad so fast, its not worth taking the chance, imo.
that you can't eat and have the shakes makes me worry about you.
please have it checked out and let us know you are ok

I'll be thinking of you

AnneH

October 14, 2007 - 12:04pm

Viruses affect mucus membranes, like those that line your sinuses. Guess what else is a mucus membrane? The same virus that is giving you this "cold" could be the cause of your pain and itching "down there". I cannot possibly diagnose you; no one online can. You should take this to a doctor. No doctor in their right mind would suggest surgery for something that from your description sounds like an infection or irritation.

kit

October 14, 2007 - 2:07pm

Granolamom and AnneH, thank you for your help and concern.

Granolamom, I really don't think it's bladder or kidney related, but I will be very careful. I've never had a kidney infection and I don't want one. I really believe the chills are related to the extreme irritation in such a delicate area. I get chills when the itching/burning gets really bad. Thank you for caring. I so appreciate it.

AnneH, the awful symptoms presented at the same time as vomiting, like a stomach virus. That came after a bad head cold. The aversion to food has me worried and just
makes everything else so difficult. I know no one can diagnose and I'm not asking for that. I thought maybe someone else would have experienced something similar, although I would not wish it on anyone. I’m just desperate for help.

I am just so weak and done in at this point. I have tried everything. My gynecologist has nothing to offer to help. I don't even know what kind of doctor to reach out to. I am afraid of going to my urologist. When he sees what has happened to me since my last
visit, I am so afraid he will push surgery. Or at the very least, tell me things are much worse than I even imagine.

I have spent a year and a half climbing back from a devastating reaction to HRT. I know that is what started this whole downward cycle. My gynecologist could not get me out of the office fast enough when she saw the condition I was in after becoming so ill from the HRT. I had zero muscle tone, where I had been riding my bike up to 20 miles a day right before I started HRT. I really wish the gynecologist would have at least told me what was happening to my body. I had no idea what prolapse was. I didn’t know what was happening and had to research and learn from the internet. The HRT was prescribed by a hormone specialist on recommendation from my urologist to try to alleviate worsening UTI infections. When I became so ill from the compounded prescription, the specialist didn’t want anything to do with me either. He was very rude and mean and just kept telling me that I could not hurt myself on the prescription and I would not get any better without it. I stuck it out for 6 weeks, by that time I was very ill. I did not know where to turn so I’ve spent the last year trying to rebuild my body. I thought I was pulling a little ahead.

But this last week has been just unbearable. I am an upbeat optimist on most days. But this is agony. I don’t know how much more I can take.

God bless you both for caring. Kit

granolamom

October 14, 2007 - 3:39pm

wow, you've been through alot
didn't realize you've already been to see the gyno about this

have you thought about homeopathy? or a naturopath? or something other than western medicine, which hasn't really been helpful?

reading your last post I imagined myself wanting to curl into a ball in a dark room and just cry. you need some serious healing, and I hope somehow, somewhere, you find it. I think you sound like a strong positive woman, and I believe that if you hang in there, you will find the right path. hopefully soon

((hugs))

Clonmacnoise

October 14, 2007 - 5:27pm

Kit,

I responded the same way to HRT, so I know what you are talking about. It was like a flu that wouldn't go away. I pulled myself off. I can't tell you how many drs...

I'm a very poor metabolizer, and can't take anything for any length of time (3 pills) without this terrible poisoning feeling creeping into my body like the plague. That includes OTC meds as well - even cough drops. Perhaps you are a poor metabolizer too. There are many of us out there.

If it were me, I'd strip my intake of all meds not necessary to maintaining life support and flush my system with gallons of lemon water and stay in bed and sleep and get well.

Could be something you are eating or drinking or even a new laundry detergent. Check for all new stuff at your house and also consider insulin resistance.

Prayers for you tomorrow,

Judy

Change what you can change; be happy with what you cannot.

louiseds

October 14, 2007 - 7:38pm

Hi Kit

You have really been through a lot. My heart goes out to you. I think AnneH Granolamom and Judy have given you very sound advice. I am no medical practitioner either, and would be reticent about suggesting anything which might add to your woes.

However, there is a product out there somewhere which is used by men who suffer premature ejaculation. It must have a local anaesthetic or something similar in it. It is applied to the penis to cut down the amount of stimulation so they can have coitus for longer without ejaculating. I know this idea probably sounds pretty left field, and it probably is, but it is a product which you would think would be safe in the vagina, and it might cut down the pain and burning when applied direct to the vaginal walls. On the other hand it might make it worse.

Another suggestion would be something like Bonjela, that teething gel that you put in the mouth to stop teething pain. It has a numbing effect and is designed to be used on mucous membranes. It is also useful for mouth ulcers. Of course that would only work if the nerves that are being stirred up are actually within reach of the vagina surface.

There are also products out there for inserting in the rectum for stopping pain from haemmeroids. These may be useful.

It sounds like you are in a vicious loop of pain > stress > body reaction > pain. If you can find something to break the loop it may settle down.

There may also be some suggestions on vulvodynia sites. There are a lot of women who experience pain and discomfort in the vulva and vagina. You might find something there.

I can only concur with the other women though, that you would be wise to go to the doctor over this. Let him/her know you are having a lot of pain and are scared to have an examination. If you cannot trust this doctor to respect your feelings, find another doctor whom you can trust.

The other person who may be able to help you is your local pharmacist who will know more about products than your doctor. S/he will know what products might help you and be safe in the vagina, even if it is just so you can numb your vagina enough for a medical examination. It might be something as simple as novocaine gel.

Good luck Kit.

Cheers

Louise

kit

October 14, 2007 - 9:58pm

Thank you all so much. I feel your compassion deep within me. This is an amazingly loving place fueled by genuine empathy. First of all, let me say that I’ve had about 10 continuous hours of blessed peace within my body. And I’ve been able to eat more today, so that has helped with the nausea. No pain, so no chills or trembles. I pray it holds. My husband got me to try Tylenol this morning and it seemed to help. I also used the WW vulva salve, which burned for about twenty minutes but then felt really good. I used it again later in the day with no burning at all. It is wonderfully soothing.

Granolamom, when I first went to the gynecologist with my problems, several months after I’d taken the HRT, I had three visits. I actually pointed to where I hurt the most each time. Not one time did anyone mention prolaspe. I had to piece that difficult puzzle together for myself. I have lost faith in western medicine and I have been actively looking for a naturopath. I definitely need a kinder, gentler approach to medicine than what I have encountered. I know I have been forever damaged but all I can do is go from here. The power of what you wrote about curling up in a dark room touched me to my soul. That is exactly how I have been feeling. For the last few days, I have likened myself to the way an animal acts when it goes off to die. It just wants to be alone. But I would wake up at night, on the sofa, to find my husband sitting near. He stayed very close, and his love kept me going.

Judy, it is so comforting to have someone understand some of what HRT did to me. The doctors do not want to hear it. The one who prescribed it actually laughed at me. My body indeed felt poisoned, I just did not realize how devastating the end-result would actually be. I could not eat, could not sleep, could not go to the grocery store, could not walk down my hall without bumping into the walls. I am still learning about and dealing with the after-effects after 15 months, and I was only on it 6 weeks. I’ve not heard the term ‘poor metabilizer’ before but it really hits home with me. Thank you for your suggestions. I will ally with lemon water and rest. And I think I’m going to change to a really gentle detergent just in case.

Louise, thank you for all the suggestions. It was kind of you to take the time to write all of them out. Your statement about the vicious loop of pain > stress > body reaction > pain is so accurate to my situation. I somehow knew that the trembles and chills would stop when the awful pain stopped. My body is relaxed for the first time in days. I am still afraid it will start up again but I am enormously thankful for the peace I feel now. Maybe the worst is over. I have been talking to a pharmacist at one of our major hospitals. He is a caring, compassionate man. I’m just not ready for a doctor to touch me until I am sure he/she is also a caring, compassionate person. I will find someone soon. I trusted all too completely. This past experience has really changed my trust level.

Thank you all for your compassion and prayers. You have made a huge difference in my day. What a world it would be if the medical community operated with the compassion of this forum. Love to you all, Kit.

louiseds

October 14, 2007 - 10:54pm

Hi Kit and All

So glad you are feeling better. I wouldn't mind guessing that it is all tied up with this virus thing you have had, and that you may indeed have passed the worst.

I too have lost a lot of faith in Western medicine, but I think that may be because I had too much faith in it in the first place. To tell you the truth I have had excellent, not so wonderful and downright expensive, useless and damaging treatments from many different forms of therapies, both medical and non-medical. I now regard all of them on a pretty equal footing, and don't *expect* any magic from any of them. To have a win, and come out healed, is wonderful, no matter who has helped with the healing.

Enough from me. Keep healing. The rest of this rant is in a new topic called Western Medicine vs the rest.

Cheers

Louise

Clonmacnoise

October 15, 2007 - 5:50am

Kit,

A poor metabolizer is someone who cannot absorb or use food or medicine at the same rate someone else can. It stays in the liver and literally poisons you. I heard this from a nurse who works for a company who tests meds on human beings. She said there are a whole company of low metabolizers who they use in special test groups. In my life, I've had one doctor who understood this phenomena; she is retired. Last week I went to a new gal, doc, and she listened, but her interest was certainly checked by her suspicion that I was a "nut case." It made me not want to trust her about the rest of me. She never discovered my prolapses which I'll save for a future appointment, since metabolizing was #1 on my list.

No one knows how frightening and debilitating it is to expect one response from medications and to have the opposite happen. I used an inhaler last spring that nearly killed me.

I won't say I've actually lost faith in Western medicine because I see what my son does, and I see inoperable and untreatable cancer victims leave his work with no trace of cancer. For the little 11 year old girl who came to his work with multiple tumors from her brain down the length of her spine no surgeon would touch and left his work with no trace of cancer, that was a miracle of modern Western medicine.

I think we have to be our own best managers, however, and when a doctor says take this or do that, you have to understand your own body well enough to be able to agree or disagree intelligently and with the authority of ownership. We allow doctors to treat us with less compassion then we allow our vets to treat our animals. I read a lot of posts here from women who are treated like badly behaved children by their doctors, and treatments become punishments! A doctor is not a parent, and illness is not a bad behavior. A doctor is a consultant and WE are paying him for his opinion. The rest is up to us.

Two years ago I cried in a doctor's office and begged him to "go slow." He laughed at me and then lied to me and consequently endangered my life. I asked my son what was up with that, and he said many doctors use painful and invasive tests to pay for new equipment for their offices because they get a piece of the pie.

As well, many doctors, especially psychologists, will label a person with this or that disorder to keep that someone coming back again and again. In a manual for establishing a psychological clinic, I read: "Never turn away someone who might be ADHD; these kids are your bread and butter." If that isn't frightening; I don't know what is.

The white coat is not angelwear, it's just a white coat.

Hoping your wellness continues and that you feel GREAT all day.

Judy

Change what you can change; be happy with what you cannot.

kit

October 15, 2007 - 6:00am

The nausea came back during the night, as did the painful/nerve like sensation. It seems to be from pressure. It nauseates me to just lay my hand on my abdomen. This has all come on so quickly in the last week. I don’t know what all has happened but it can’t be good. I will figure out what kind of doctor to see.

granolamom

October 15, 2007 - 8:52am

sending up some prayers for you kit

and your dh sounds like a gem

AnneH

October 16, 2007 - 9:40am

Whenever someone has chronic problems with mysterious symptoms and doctors dismissing you out of helpless puzzlement, I always think of collagen vascular disorders. There is a variation of the autoimmune diseases that targets the mouth and genitals. You speak of generalized muscle weakness? As a reaction to the HRT? Do you know for sure it was the HRT or were these things just linked in time? Ongoing problems targeting multiple systems and locations on the body demand investigation into chronic infection, and the rheumatological diseases. This is not a mechanical problem. I would not see the Urologist if I were you; I'd see a rheumy. Edit add: I'd see a neurologist too. Get a full workup, B12, heavy metal, etc. etc.

kit

October 17, 2007 - 2:03pm

Anne, I wish I could blame the muscle weakness I experienced on something other than HRT. It was the first time I'd ever felt guilty for abusing my body, I'd love to lay the cause elsewhere. After I got so sick, I truly felt guilty for taking it which is probably just another example of how HRT overrode my system. I was just not the same person, emotionally or physically. It is very clear that the HRT caused the muscle weakness, or better to say, how my body reacted to HRT that caused it. The first day the doctor put the drops on me, the change in me by that night should have taken a week or two to see. Then in just a few days, I was really ill. When I stopped using it six weeks later, my body took a free fall and I lost all muscle tone. I was so weak and so ill. No one could understand it. If you investigate HRT though, as I did later, you will find that there are sometimes awful rebound effects when you discontinue it. And if I understand it correctly, it shuts down the natural hormonal system, so when you stop taking it, for a while you are left pretty much empty.

My muscle tone came back quickly as I got strong enough to exercise and move around a bit. But I was on the couch for months. I could not even walk my little dog for several months. I came off the prescription end of August 06. My husband lost his job in October 06 and I was still really sick. Having him home was a blessing. He took care of everything. When he went back to work 6 months later, I was doing better. Not myself, but better.

I think Judy's explanation of poor metabolize probably explains what happened to me best. My body just would not accept it. I've never been very tolerant of medicines, but this was bio-identical HRT, and I was told in plain language that 'I could not hurt myself on it' which is why I stuck it out for six weeks.

This particular prescription was one that was formulized between one doctor and one pharmacist. It contains testosterone, which my gynecologist thinks is the part my body had the problem with. It came in a little bottle and was supposed to used by the drop. It was very thick and it was impossible to get consistent drops. The pharmacist said that was because it was difficult to get the proper consistency, and sometimes they had more or less thickener. I guess mine had more. I asked him if the prescription itself could have been incorrect. He said that was impossible because it was made in batches. The pharmacist is a nice man and was very concerned. He called me several times to check on me. He said he just could not understand what had happened.

I still have the prescription. I'd love to have it tested, but I don't know where to get that done. I guess I will never really know why my body reacted like it did, but I know in my heart I'm still paying for it.

I’m not against modern medicine; it saves lives every single day and I'm thankful for it. But I’m surely not as trusting as I was before this. I know, for me, I have to be careful. And I believe that there are others out there who've had similar reactions. If not to HRT, then to other meds.

Thanks for the prayers everyone. You are all really wonderful.

I have a doctor's appointment Tuesday. Kit