It has has been such a long road!
I am going to try to make this short...I wish myself luck!
Our daughter is 11 yrs old and suffers daily from what we now know as Pudendal Nerve Entrapment. We were and still are at our wits end.
When our daughter first started having symptoms, we knew it as a very sore, red vulva. She described this as “like boiling water was poured on me”! She was in extreme pain! We didn’t realize that the pain came all the time...not only when the vulva was red and inflamed. We thought that the pain was a symptom of her Vulva getting the “burn” or just recovering from the “burn”. We didn't understand....she wasn't red....why is she in pain???? It took us a long time to "understand" the pain. When nerves are inflamed the inflammation can come out of the skin (redness). The "hot boiling water" or "acid like burn" is not only “on” the skin. It happens on a daily basis “inside” and “out” without the redness.
A little girl only explains it as well as she can and the parents always want to believe their child, but not knowing...what do you do? When a young girl has these types of symptoms, before examination, some of the first thoughts are abuse. This in itself is extremely hard for my husband and I. After examining, it could always be seen that it was not. Every time we see a new Doctor the question is still there. It is heart breaking!
Through the years she has been sent to her Pediatrician, a Dermatologist, 3 "adult" GYN's, had Acupuncture, Magnetic Stimulation, seen a Chiropractor, seen an Allergy specialist, a Physical Therapist, tried pain medications, had and MRI, 3 Ultrasounds, tried WAY TOO MANY creams and the list goes on! She has been checked for everything that you could imagine. Nobody was able to diagnose our daughter.
Talking about it to family, co-workers and friends, researching on-line and finally telling the Doctors what WE want, we found out what she has! It took way too long!
Sadly this is not an easy subject/medical condition to talk about (because of the area). For an adult and for a child, (now young girl). It is hard to say..." I have chronic pain. I have Pudental Nerve Entrapment." "What is that?" "It is a burning, loss of sensation or numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning." "Where does it hurt?" "My private parts, my back and my thighs." Yeah, o.k., that goes over well with people that you don't know well or my daughters friends. So we keep a lot in. Only "tell" when necessary. Although, I have to say we do talk about it to more people then we use to ....for our daughters sake! Most of the time we say she has Puental Nerve Entrapment and they don't ask anything further..... I, at times have tried to explain it in a little more detail. Again, once you mention anywhere near "that" area I feel that it is their first assumption.....abuse. To top things off, our daughter is also suffering from NO SLEEP! She cannot sleep, she has a hard time falling asleep and then when she finally does, she wakes up 3-4 times a night! I have to sleep with her every night.
Everyday is a tearful day for her. Her pain is mentally and physically exhausting! The pain consists of needle like pains to knife stabbing pains. It can be an awful, big, painful constant pinch. Sometimes it feel like its an electrical shock and sometimes its throbbing, pulling or tugging. The pain will stop her in her tracks. Her clothing consists mostly of yoga pants and sweat pants.
The episodes of pain are not consistent. They can last from 5 minutes, 1hour, 1 day or several days! Sometimes they will come one right after another and sometimes she gets a break in between. She does not get the “burn” as much anymore, but she does get it. Everyday we wait one more day until her next appointment. With the pain comes "depression" (I hate that word!). In the past years and only a couple of days ago she has said things like... "Mom, The pain is so bad, sometimes I want to kill myself." "I would be better off in heaven with Meme (grandmother). At least I wouldn't have any pain there." "I wish I could cut my private parts off" It is completely tearing her apart! She is a very bright, beautiful, fun young lady. She takes blame for all of it. ?? She says that she is ruining our lives. She says, “I want to do well in school (which she always has) but I can’t lately, I am so tired.” “I can’t take it anymore Mom.” “I am so exhausted Mom, Please I just want sleep.” The pain and the lack of sleep have equally affected her life. As her Mom (and Dad) it is killing us!
Currently: Our daughter has been going to Bostons Children's Hospital for about 6 months now. She has been diagnosed with Pudendal Nerve Entrapment. Without known cause. (We can only guess). She is being seen at the Boston Children's Hospital Pain Clinic. She had a nerve block done in October. They said that she is the only child that they have ever done this on. She was pain free immediately. As the days followed she stayed on a pain scale of a 5-6. This lasted for about 1 and 3/4 months. Which according to everything I have read and her Doctor is pretty good. She also started to sleep on her own and was staying asleep (not waking up 3-4 times a night)!!!!! Yeah! But short lived.
She has been in so much pain the past couple of weeks! It might be the worst that I have ever seen it! Poor baby! For a Mother (and Father) to see their child in that much pain and they can't do anything (except comfort them) is heart wrenching. This whole thing has literally broken our hearts! One of the most aggravating aspects of this awful illness is that people will see her playing with her brother and friends, laughing, going to school, doing her homework, playing her Harp, playing soccer, watching t.v.......whatever it may be.......AND they will say, "She looks like she is fine now". "She doesn't look like she is in any pain." "She can't be in too much pain if she is doing that?" She/You have chronic pain, your not dead! I would be really worried if she DIDN'T do these things! When I had a chronic pain (neck injury,) I still got married, laughed, went to work, and had fun....but I did it all in pain! When you finally call it a day, then you might let go a little because nobody is around. I use to. The pain for me was sometimes worse at night. It is sometimes for my daughter too.
So...I talked to her Doctor in Boston last night.....we had a follow up appointment scheduled this Wednesday....but I couldn't see traveling several hundreds of miles to tell him what I could tell him over the phone. He has decided that he wants to try another nerve block. So she is scheduled for that this coming Thursday. We had a good conversation. He is interested in our daughter, which I appreciate! I understand that Nerve Blocks are only a temporary measure but have also dimensioned the pain a few. We really don't have many choices. She can't live her daily live like this!
We, for a long time thought my daughter was the only one! Little by little we are finding that there are many people suffering from the same awful disorder/illness! I haven't read everybody's story YET. But I will! We would really like to find a parent/parents out there with a young child that is suffering from the same symptoms as our daughter. Is there anybody???
Whew!
Thanks so much for your time!
I wish all of you well! HOPE for a cure!
Tammy
