PC26 here, yet again.
I logged on to check on everyone and holy moly there have been a number of posts on both of the forums I started. I'm happy to feel the comfort that others are going through similar problems but sad to know so many of have this issue and so few answers to go on.
However, I have good news on my end-my symptoms are still slowly getting better, I'm able to control them a little better too, and I've figured out some stuff. However, I'm not sure if I'm slowly getting better or I've plateaued to an "okay but not great" level.
I'm going to list an UPDATE of my symptoms and what I do to feel better below:
MY CURRENT SYMPTOMS (It's been 1yr 2 1/2 months):
*I’m still testing NEGATIVE for yeast and STD’s so on goes the mystery illness. HA!
*My inner labia, normally just my left one, still swells from time to time and can be a little itchy. No discoloration or anything. This happens mostly when I’m stressed, eating more sugar then I should and/or drinking alcohol two days in a row.
*The inside glands around the clitoris but under the hood swell normally when the labia do. However, GOOD NEWS, the inside right gland does go down now- it’s NOT swollen all the time.
IMPORTANT –READ THIS* I do see some sebum (the white stuff) under the clitoral hood, but this is NORMAL just not when there’s extra buildup- which I still sometimes have. I still have the little white dot (hard sebum buildup) that I can remove and the doctor has removed, but I’ve found I’m irritated for a week or 2 every time I do this so it’s not worth it, I do better when I just LEAVE IT ALONE.
****WHAT I DO FOR BUILD UP NOW: I buy fragrance free baby wipes and VERY gently clean under the hood and around the labia. HOWEVER, I only do this during the flare ups- I TRY TO LEAVE MY LABIA AND CLITORIS ALONE AS MUCH AS I CAN. The less I go poking around and “checking” it out, I’ve found the less it bothers me. I shower every day or every other day, so on the days I don’t I use the baby wipes to gently clean down there but I do NOT pull back my clitoris hood unless I have to!!
MY DIET & LIFESTYLE:
*I do still have sex, I just limit how many times and such. I listen to my body. I don’t think this health issue is contagious, just annoying. I’ve been with my guy for a year and he’s A-OK. ; ) I use the regular kind of KY to help things out-just in case- which has been helpful (hope that wasn’t too much info.) Anyways, do what you feel. I try not to stress about this because I still want a sex life and I want that for my boyfriend as well. He’s very patient and understanding which HELPS A LOT. If your boyfriend isn’t understanding or thinks your making your symptoms up- GET A NEW BOYFRIEND AND FIND SOMEONE WHO WILL SUPPORT YOU- they are out there! If you have a husband who’s being a punk- have him read this and if he still doesn’t have sympathy- give me his number because I’ll give him a mouthful! We all deserve to have love and support!!
*I get at least 8 hours of sleep; this helps your immune system, memory, mood, and overall health. You may not need 8 hours, however get as many hours as it takes for you to feel fully rested.
*WARNING: vivid info about to follow- sorry- I no longer shave anywhere “down there.” I have found this does wonders for the sensitivity and irritation issue. I have also found that if I don’t “trim” down there it is also helpful. I’m a bit self conscious now because I feel like I’m walking around with a Congo JUNGLE between my legs but at least I’m walking around in comfort and that’s what gives me peace of mind. I just shave the bikini line so I can wear my bathing suit. And my boyfriend does his best to convince its not that bad, love him, but whatever I know it is, haha. I just have to laugh about it. My Congo Jungle and I will survive. ; )
*I’m sticking to the no sugar, no yeast and no alcohol diet, which mean I don’t cut these out of my life fully- I just limit them. I found taking all these things completely out of my life DEPRESSES me and that hurt me just as bad.
WHAT I EAT: -Rice noodles (you can find these at Asian grocery stores if you live in the city, or Whole Foods, or Trader Joes or any all organic/natural food grocer.) It’s no comparison to wheat noodles but I’d rather of some kind of pasta then no pasta. These noodles are best if you follow Thai recipes (pad thai is yummy.)
-Yogurt for the cultures (I’ve read this is good and bad, it seems to be okay for me.)
-I allow myself Frozen yogurt because it has limited sugar and all those good cultures.
-Carrot Juice for my immune system (THIS IS VERY GOOD FOR YOU and people have been using it as a cure all for ages, however, it’s hard to drink, but the trick is: do half orange juice and half carrot juice and it makes it TASTE so much better!)
-Garlic (another age old medicinal food/herb/etc), it’s also good for your immune system. I eat things like garlic chicken or garlic shrimp.
-Zinc is also good for your immune system, you can find zinc in: Oysters (best source), Salmon, beans, Clams, yogurt, beef, lamb, pork, crabmeat and chicken. However, I try to stay away from red meats- I love them but they’re not as healthy for you.
-I stay away from wheat or malted cereal, wheat bread, anything yeast. I’ve bought rice flour which is tricky to use so I normally just stick to breads that don’t rise like Nan (Indian bread) and I’ve heard Rye is better to eat but I’m not sure about that.
-Corn tortilla’s or corn taco shells are safe as long as there’s no wheat flour.
-The rule- the fresher the food the better, I try to stick to but we’re all in a rush sometimes so I try to stick to my rules the best I can.
-Rice cakes, and rice chips and rice crackers (Whole Foods is a good place to find these.)
-Mozzarella cheese is okay and a good source of Calcium.
-I take Calcium and Zinc supplements. I try to limit my dairy intake BUT WOMEN NEED CALCIUM. My family has a history of osteoporosis so I take these vitamins and use rice milk.
-I have found the easiest types of food to make for my diet are Thai, Japanese, Mexican (if I make it not take out), and fresh American style stuff like lemon, dill chicken with jasmine rice and veggies. (Fresh squeezed Lemon does wonders for flavoring foods.)
MY LAST ADVICE FOR WHATEVER IT’S WORTH:
*I knew "stress" really caused my symptoms to flare but a recent depressing and stressful situation (this seems to be the ultimate combo- depression AND stress = swollen uncomfortable labia and clitoris.) made me realize that even if I’m feeling better this “combo” will still cause a “flare up.” SO VERY IMPORTANT: Get enough sleep and try to think positively no matter what!! I lost 3 family members and my 16 year old cat this past year, I’m currently looking for a job in a high stress industry, I’m sliding by on my budget, and I have a long distance relationship- trust me IF I CAN THINK POSITIVELY SO CAN YOU!! Life is always going to be throwing curve balls and it may be awhile before doc’s figure out what’s wrong with us (trust I will keep bugging them) so the best thing to do IS TO LIVE LIFE and let YOU rule your life, NOT this health issue. I think about it this way on my bad days- yes I’m uncomfortable, yes I don’t think it’s fair, yes this really sucks- excuse my French, but at least I’m not lying in a hospital bed with a terminal illness or at least I have all my limbs in place, etc etc. Appreciate what you have; it makes it easier to deal with what you don’t have. Okay, I hope this helps.
Good Luck to Everyone- If you have any more questions just post them on this forum and I will eventually log back on and tell you what I can.
I recommnend you try something like Colchicrine with the other stufff. I have Behcet's Sybdrome and I also am very careful about taking care of myself and about what I put into my body just like you. Colchicrine is a prescription immune suppressant. It comes from a flower and it is the mildest and safest medication you can use to treat your symptoms. It could really give you that extra little push you need to get better. It could make the inflammation totally go away. You will always have flares but you are on the right track with learning how you can control them.
I am experiencing some weird symptoms, some of which are like those you described:
*sebum build up on clitoris--not the hard stuff but it's still an unusual amount
*dryness at times
*other times excessive discharge, still normal, just more than usual
*sore clitoris after a certain amount of sexual activity
i had my first uti back in october, and i have had 3 since then. i have also had 2 yeast infections in the past 3 months.
but everything was just finally starting to get back to normal.
and then the other day my boyfriend and i were fooling around and everything was great but any contact with my clitoris was horrible. it was feeling swollen but i just figured it was being oversensitive because i know that can happen during stimulation.
but anyway, when the condom accidentally brushed the clitoris it burned, and was even more sensitive for the entire rest of the night.
no pain during urination or anything....but it hurt to close my legs.
everything was fine when i woke up the next morning, and it was all fine today.
but i was noticing tonight it felt kinda weird, and i looked and it is pretty red.
i am on a few different meds, if that makes any difference:
*pentasa (an immune suppressant for crohn's disease)
*an antibacterial that i will finish in a few days
*birth control pills
i am also at the end of my cycle...i just took the last bc pill yesterday, so my period should be coming in the next couple of days. i am also under a lot of stress as my high school career is ending in a few days, and i haven't been gettting as much sleep. i also have a cold. and a weak immune system, what with the pentassa. and i have read that all of these things can be causes...maybe it's just a giant mix of a lot of things, and if i fix those things it will get better, idk?
i have been std tested, as well as all types of feminine cancers. and i don't have any of those.
i'm not sure when i can get a doctors appt next, so i'm kind of at a loss right now. i really hope this will clear up.
thanks for any suggestions. i will check back soon, hopefully when i do all will be well.
i also hope the rest of you are getting better, best of luck :]
You said you have Cohn's Disease. That disease runs in my family. I have another autoimmune disorder called Behcet's Syndrome. Your gential and bladder symptoms are similiar to Interstitial Cystitis, I have that, but your bladder symptoms could also be caused by the Immune suppressants weakening your immune system. We want you to be able to control your immune system, without having to weaken it too much. Immune disorders are diagnosed mainly by the area of the body the immunes system is attacking. The clitorial inflammation is probably caused by your immune disorder. It is also common for a person with one immune disorder to develop others. Some immune disorders are triggered by genes, but others are triggered by things like other immune disorders, things in the enviroment, stress and illness. I also take immune suppressants, so I understand the struggle to control the problem without weakening your immune system to the point that you aren't going to get sick from something else. This can be hard to do, expecially when it sounds to me like you actually really need a stronger dose of immune suppressants at this point, because your symptoms are a sign that your medication is no longer doing enough to control the disease. You need to discuss all these things with your doctor.
I have a few suggestions for supporting your immune system at the same time you are suppressing it to try to keep the immune system balanced as much as you can.
1. Pau D' Acro inner bark, the highest quality you can afford. It comes as tea, capsules and extract.The extract and capsules work the best. It is an antibotic, ant-fungal, and many many other things. It will keep your body stronge and safely help to keep any infections away on a regular basis. It will keep your yeast infections away and prevent your bladder infections from happening. It is really a powerful tool we can use to support our immune health, because we want to avoid allowing ourselves to get sick which can quickly turn into a downward spiral for us. It also will help your body to be able to heal.
2. Digestive Advantage Crohn's and Colitis Formula. Your have to try this stuff. I take it for Behcet's Syndrome becuase my illness causes similiar bowel symptoms. It's important that we put good bacteria in our bodies to keep the bad bacteria that is now being allowed to build up in us away. This will also help to support yor immune system, and balance out everything. It will make you feel better and help to slow down your flares.
3. Aloe Vera Juice This could be very helpful for you. It helps to calm the system. It can also protect you stomach and intestines from the things your are ingesting. Anything you can do to calm your system will help to slow your flares down.
4. That a mulit- vitamin. If you have a problem with all that Iron, take a mulit-vitamin without Iron. Exercise, drink 8-10 glasses of water, eat a healthy diet, avoid stress and sleep 8 hours everyday. These are the things that will slow down your flares.
Ive had an issue with my clit being sore or swollen and sometimes bleeds for the past few days. Also have that built up of white stuff under the hood. Has anyone found out what it is? Im also pregnant and have been on antibiotics for a month now. 2x for a bacterial infection and 1 time for my gallbladder being inflammed. i just went to the doctor 4 days before i noticed this and he looked and didnt see anything. I also went the day all this happened ( just earlier in the day b4 i noticed all this) and the doc didnt find an infection or anything. so i dont know what this could be. Is it normal to have white stuff under ur clitoris hood? Ive never noticed it before. I know that i could be swollen due to being prego but i dont know about this white stuff. im irriated by it and dont know what to think. im going to make a appt.tomorrow and see what the doc says but i was just wondering if anyone knows what it is, so that i can ease my mind.
The bladder infections amd gallbladder inflammation suggest a weakened immune system or a systemic infection of some sort. It could all be due to your pregnancy and may resolve after the birth. Or, it may be the early symptoms of an on-going immune disorder. Have you ever been treated for pinworms? Everyone should treat themselves regularly for them, but you can't do it while you are pregnant. I would start using Pau D' Acro after the birth to help get your immune system under control. Keep up with your doctor about any inflammatory problems that you have.