PCOS newbie w/scary treatment

gypsydreams · 09-04-2005, 08:09 PM

About a month ago I was told by the doctor that I had a severe case of PCOS. But at the same time he told me that I was a special case because the symptoms that I had no other PCOS patient had ever complained of.So I need to know if anyone else out there has the same problems that I have. Ok, here they go, first symptom is pain. The pain that I'm experiencing is so severe that to make it through a day is considered an act of divine intervention. I have constant pain in my lower abdomen that gets so bad that nothing helps!My ovaries as well as my uterus are extremely painful and has a feeling that can only be described as being heavy or full. Pain medications (I'm currently being prescribed 500 mgs. of Precocet w/oxycodone) no longer do the job, and not only is the pain in my belly but it's also in my legs and lower back. I have maybe 1 period a year. The pain and clotting that comes along with the period is something that cannot be described with words. I bloat so bad that it looks as though I'm 6 months pregnant. I'm 29 years old and my hair on the top of my head is thinning out!!!! When i first started noticing this, I thought that I was just imagining things. But my hair line has definitely receeded and thinned out. I miscarried two pregnancies with the doctors at the time telling me that they had no idea what had gone wrong, but please pay no attention tho the golf ball sized cysts on your ovaries because that's normal. My breasts are tender, I'm REALLY moody, and lately I've had to deal with nausea and vomitting. And now my digestive system is completely screwed up. They're talking to me about Irritable Bowel Syndrome.
With an ultrasound the doctor has counted more than 30 cysts that are just on the one side of my ovaries and they are rather large. The doctor can't determine why my uterus is in such bad pain because on the U/S it looks just fine.
However, on the 19th of Sept. I am scheduled to have a complete hysterectomy. Like I said, I'm 29 and for all this to be happening to me I can honestly say that I am really looking foreward to having this surgery. I'm scared, don't get me wrong, but I can't wait to finally be pain free. I have been battling this problem for 8 years now. (It all started when I was 23.
Please I really need to know that I'm not the only one out there with these problems!!! Or having to have a hysterectomy at such a young age.
Feel free to email me or to respond to this message. I would really appreciate it!
Gypsy.

prunepie · 09-04-2005, 10:08 PM

have you had second opinions? i do know hysterecomy is the last option for many women.

can you get copies of your lab work so people here can look at your numbers and make sure the drs arent missing anything???

good luck xo jenn

lovelyinkedlady · 09-04-2005, 10:40 PM

i have to i like the idea of getting a second opinion.

I know your in alot of pain. Have you ever considered going to see a chiropractor. Sometimes you can have a pinched nerve that can be causing some of the pain in your urerus. or other places.

Now i know they arn't quacks, there is no way a quack can have more training hours then an md..

Medical Chiropractic
508 anatomy 520
326 physiology 420
401 pathology 205
325 chemistry 300
114 bacteriology 130
324 diagnosis 420
112 Neurology 320
148 x ray 217
144 phychiatry 65
198 obgyn 65
156 orthopedics 225

2756 total 2887

those are the hours and classes they have to take. Some chiropators don't have to take as long ( the class that is) but i would consider going to a chiropractor and see if that won't help the pain first before you have this surgery done.

Now as for as all of those symptomes. I my self have never had that kind of pain with my pcos, i haven't had pain what so ever with my pcos. Aside from the irritation mentally.

Hope this helps you

holdingbacktears · 09-04-2005, 11:07 PM

Hi..I'm Alex...I'm 17. I just wanted to let you know..that I get that same pain too! Omg...all the time...it's horrible. I feel as though I can't move. It's in my back...and my lower abdomen...no leg pain though. I'm the complete opposite when it comes to my period...I have it pretty much all the time. It's horrible. If there's one thing I can understand is the pain. I've asked for dozens of different pain meds but none work. It's hard to deal with. Please look into a second opinion before you get the surgery.

Lots of luck
-Alexandra

Binxsmommy · 09-05-2005, 12:55 AM

First off welcome to SC. I'm sorry your experienceing so much pain.

Umm you mentioned you have had 2 miscarriages... do you have children of your own? If not do you think you may want them later on? I can't say I understand your pain because I dont have any physical pain w/ my pcos. I just think your awfully young for a hysterectomy (just my opinion). I def. think a 2nd opinion would help, if do nothing but ease your mind....maybe its as simple as having some cysts removed?

DH had a vasectomy when he was 25 after having 2 kids with a previous wife. They got divorced and he remarried (me of course) and now we want to add to our family so we had to "put" him back together. Anything can happen a hysterctomy just seems soooo permanent. **GL** on whatever you decide.

Loreo123 · 09-05-2005, 01:24 AM

Welcome to SC, I agree with some of the other posts. I think you should get a 2nd opinion before you decide to go ahead with the hysterectomy. I understand that you are in alot of pain and you want some relief but there are other treatments available that can help you. I just want you to make sure you get as much information as possible before you make a decision. Are you seeing a regular Gyno right now? if so, I would suggest that you try to see an RE. Good luck and I hope things get better for you.

Juana Baby · 09-05-2005, 01:43 AM

How was the decision made for the hysterectomy? Have you had any other surgical procedures to remove the cysts? Have they had you on birth control pills to decrease the cysts? Is this doctor board certified? I don't understand why they would jump to this conclusion right off the bat. I was told when I was 19 that I needed a hysterectomy by the OB I was seeing. The doctor I worked for turned him into the AMA because they had done nothing - just told me I needed a hysterectomy or go on narcotics for the rest of my life without any testing or anything.

I agree to a second opinion. I would definitely not do the surgery until you have explored all the other options. A hysterectomy seems to me that it would be the last resort type of action.

Good luck to you.

laural

CathyWood · 09-05-2005, 02:06 AM

Hi Welcome to SC. Glad you are here. See you around.

USF379 · 09-06-2005, 12:30 AM

Welcome to the site. I am sorry to hear you are in so much pain. I had pain back when I was 13-14 years old. I had another large cyst removed not related to PCOS. It was called a dermoid. I would def. get a second opinion. You will really like this site and all of the support from the wonderful people. It is keeping me going.
Ashli

SherriM · 09-17-2005, 12:49 AM

This is my first post on the board, and I just wanted to let you know that I think if this is the decision you want to make, then go for it. I honestly am currently thinking about it my self. I've had symptoms for PCOS since I was 12. Starting with irregular perioss (once every 3-6 months), back pain, followed by sudden weight gain, severe cramping, and high levels of testosterone, and was diognosed about 2 months after I turned 17 with PCOS, having several large cysts on my ovaries thought I never got an actual count. And honestly, Im thinking about doing it as well... And Im only 19, almost 20. Im just glad that Im not the only person thinking about it. Good Luck with the surgery!

SnowFlower · 09-17-2005, 01:01 AM

welcome.. i get the pain part on my left side as well and its awful

MiWolverineMommie · 09-17-2005, 01:09 AM

Welcome! I am so sorry that you are going through so much!
Where in Michigan do you live? I belong to a MI PCOS support group and maybe we can find you another doctor.
I have had several ovarian cysts removed that ranged from 8-12 pounds. I think they should be able to just remove the cysts and not all of reproductive organs. An "H" is not the answer you will still have PCOS!!!!!!
Hang in there.

SherriM · 09-19-2005, 03:16 AM

Good luck today!!!!! I hope you let us know how every thing went when you get out!

Dreaming Wolf · 09-19-2005, 10:30 AM

Welcome to SC.

I agree, a second opinion is essential! A hysterectomy is very drastic! You don't mention any other treatments that you'd tried, what about metformin or even just the pill (not a solution I approve of really, but in such drastic cases...) What about lifestyle changes, what is your diet like, do you exercise?

Most of your symptoms are known PCOS ones, more or less common yes but still there as you can see by the posts. Check out the different symptom boards to see how people have managed them.

I hope you see this before you go in for surgery, because I wouldn't be going through with it tomorrow. Only a month after diagnosis, and without trying anything else, this is way too drastic and I'd be suing the doctor for malpractice personally.

Lindie · 09-22-2005, 12:08 AM

Hi gypsydreams,
I am so sorry you are going through this. You must be so scared. I also wanted to urge you to get a second opinion as soon as possible. I don't want to frighten you any more than you already are, but I think you should know that the the symptoms you describe sound much like symptoms of ovarian cancer, which is very treatable if found earlty. Here is some info from the National Ovarian Cancer Coalition www.ovarian.com
Please see another doctor soon. I am sorry you are going through this and I hope it is not this, but boy your doc should have screened you for it. Please let us know how you are doing and feel free to PM me if you'd like.

Symptoms of Ovarian Cancer

Ovarian cancer is difficult to detect, especially, in the early stages. This is partly due to the fact that these two small, almond shaped organs are deep within the abdominal cavity, one on each side of the uterus. These are some of the potential signs and symptoms of ovarian cancer:
· Unexplained change in bowel and/or bladder habits such as constipation urinary frequency, and/or incontinence
· Gastrointestinal upset such as gas, indigestion, and/or nausea
· Unexplained weight loss or weight gain
· Pelvic and/or abdominal pain or discomfort
· Pelvic and/or abdominal bloating or swelling
· A constant feeling of fullness
· Fatigue
· Abnormal or postmenopausal bleeding
· Pain during intercourse

Persistence of Symptoms

When the symptoms are persistent, when they do not resolve with normal interventions (like diet change, exercise, laxatives, rest) it is imperative for a woman to see her doctor. Persistence of symptoms is key.

Because these signs and symptoms of ovarian cancer have been described as vague or silent, only around 10% of ovarian cancer is found in the early stages. Symptoms typically occur in advanced stages when tumor growth creates pressure on the bladder and rectum, and fluid begins to form.
If vague symptoms persist longer than 4-6 weeks, insist on a thorough rectovaginal examination.

A Rectovaginal pelvic examination is when the doctor simultaneously inserts one finger in the rectum and one in the vagina.
It is helpful to take a mild laxative or enema before the pelvic exam.
Have a comprehensive family history taken by a physician knowledgeable in the risks associated with ovarian cancer. 5% to 10% of ovarian cancer has a familial link.
Every woman should undergo a regular rectal and vaginal pelvic examination. If an irregularity of the ovary is found, alternatives to evaluation include transvaginal sonography and/or tumor markers. The most common tumor marker is a blood test called the CA-125.