For those with pelvic pain or non stop bleeds

Pattyannruss · 03-12-2003, 07:50 PM

I am hoping a Mod can make this a sticky. Hint, hint

Do you suffer with cronic pelvic pain?
Here are some site to check out for info.

Endometreosis
http://members.tripod.com/ibkimmi1/page37.html

Adenomyosis(Pain 24/7 again Infertilty)
(http://www.althysterectomy.org/adenomyosis.htm

Interstitial Cystitis (Bladder issues)
http://www.ichelp.com/whatisic/AnIntroductionToIC.html

Fibroid Tumors (Cause of excess bleeds)
http://www.nuff.org/health.htm

Pelvic Congestion
http://www.dyspareunia.org/html/pelvic_congestion.htm

Pattyannruss · 03-13-2003, 04:28 PM

Hoping a mod could make this a sticky for all.

Thanks,

Patty

scarlet · 03-15-2003, 08:33 PM

Please make this into a sticky!

I am hoping that if I have endo it's not too far advanced, but like all things the sooner one finds out the better. So maybe this will help other cysters!

happytoknow · 03-16-2003, 01:27 AM

There ya go. Sorry it took me so long to get to it. Hope this is helpful information to other cysters as well.

Pattyannruss · 04-01-2003, 06:46 PM

Thank you, your a gem!

andie1414 · 04-03-2003, 12:59 AM

Hi everyone. I'm a newbie. I was just diagnosed officially today. I'm still trying to decide if I am :o) or :o( about it. Nice to have a name to all the craziness but I have TONS of questions... ANYWAY...

I have endometriosis too. so to answer your question cramps are very common, and most often treated with an anti-inflamatory and a birth control pill. I also have poly cystic disease and that in itself can make us more crampy too I think.

Please just know you are not alone and if you need anything - just write... i'm here and boy can i relate.

Take care,
andie

Pattyannruss · 04-10-2003, 03:24 AM

My ordeal started 2 years ago.Here is my time line......

Jan 2001- No AF

Feb2001-No AF

March2001- Dentist sends me to a specialist thinking I could have oral cancer due to odd look of mouth. Turned out to be because of my hormones. During AF time I got real sore spots through out.
(Looked like vericous veins)
Found out I'm allergic to Vicodine.

April2001 -seen new GP for lack of AF,extreme weight gain and menopose symptoms. -DX PCOS.

May2001-confirmed test results, given Mercette and GlucXR and told to do Low carb. Started feeling a nervous break down coming.

June2001 -Some kind of allergy HIVES started.
Stopped all meds.

July2001 -Allergies continued. Trip to ER.

Aug2001-Still have the HIVES, Appt with allergist,after 2nd trip to ER. Had allerdy med changed 4 times by now.
Test results showed internal infection/bleeds. I told them about PCOS. He asked about US. I didn't have one yet. He suggested I get one. Back to GP. She ordered it.

Sept2001-Hives still. US results..Came back normal, no cysts!??

Oct/Nov Feeling like crap all the time. Lots of "colds" "sinus infections"

Dec2001-Started GlucXR again. Hives went away within 2 weeks!!

Jan2002-Upped Gluc to 1500mg--Major anxiety attacks started.
Took a month or more to figure out it was the GlucXR.
Given Welbuterin, but made it worse(Not good for anxiety-told that 10 months after the fact--oh how we learn with our DR's)

Feb2002--Can't handle no AF and all the symptoms. Taught DR about Yasmin(Thanks to this site) Did really well on it. Almost no side effects.

March2002--Severe infection(strep) Cough for 3 months, numerous antibiotics because it would not clear. Very sick all the time. Pelvic pain began.

April,May2002 same old thing..Fatigue, pelvic discomfort,sexual pain, AF changed.(Heavier and more painful)

June2002--Asked to be checked for all possible infections.
(Having a hard time with cronic pain and presure.
Increase in urinating.) Treated for Bacterial Vaginitis.
US ordered....Results...NORMAL??

July, Aug2002--Can't stand the pressure. But dealing with it.
PMS is horrible. AF very painful.

Sept2002 2nd US--Still complaining of pain.Anxiety is getting worse..Found out Welbuterin can make anxiety much worse.
Tried several antidepressants with failure on all.

Oct2002--Finally got results..CT,IVP and new US ordered.
Mentioned how "often" I am peeing. UA taken...FLAMING UTI!!
Figured that is what I suffered with since June.It was so bad I was peeing large mounts of tissue!(sorry)
DX with Epstein Barr Virus!!(Basically I was suffering with Mono like symptoms for 8 months)Cause...Strep infection. Reocurenences can happen for 12-18 months.(Catch "colds" and sinus infections all the time.)

Nov2002--results back...CT showed 'possible' fibroids,Adenomyosis(form of Endo that attacks the uteris) and a tilted uteris.
Still fighting monthly UTI!! Painful sex.

Dec2002 I get mad enough to make my own appts.
Called a Urologist. He set up a test. While waiting to go in, I found info on the net about Endometreosis and how it's effects can effect your body. I was shocked!! I had all the symptoms! (Which are very close to ovarian cancer) I spoke to the Urologist about it. He did the test and told me to follow up with my hunch.

Late Dec2002--Made appt with a new GYN/Surgen

They got me in the first week of Jan2003. I took all my resulsts and he told me I did my homework. I had a Lap(surgery to DX Endo) on Jan22nd2003. All above was confirmed.
Decision is made to have a total hysterectomy.
I am sooo done with all this crap!!

Feb2003--Pain is so bad now I have asked for pain medication.
Having dificulty standing. No relief. Pain meds started kicking in enough to take the worse of it easier.(I was going to work while taking Percet!!)
Pressure still dificult to handle. I felt like I was 10 months PG and ready to deliver but constipated!!(how's that for an example?)

March 18th2003--Finally! Surgery day!
Total Vag Hysterectomy. Ovaries removed as well. Dr said since I have been fighting PCOS, it would be better to take them.
Findings...My right tube and part of ovary was totally blown from Endometreosis. Scar tissue was severe as well.

I am now 3 weeks post op and I am on day 17 of antibiotics because of a flipping UTI!! Sucks! That is worse than the actual surgery pain!!

I go back in next Weds for another check.
I will also ask for extra time off from work.

Other than that, I still am doing better than BEFORE surgery!
I am trying to enjoy my time off from work and I feel I have healed better than expected. I still have at least 3 weeks to heal from the surgery but it can take up to a year for my body to adjust to everything.

But it sure explains the "internal bleeds/infections"
Can you believe my allergist found that?

The type of BCP can effect you highly. Endo grows much faster with higher estrigen pills. I don't know yet if this is what flared mine or if it was a coencidence. So if you d have Endo, make sure you get the right kind of BCP.

Those who have a treatment for endo or a hysterectomy also have to becareful because the endo can come back, especially with the wrong kind of BCP/HRT.

I wanted to share my history so those of you who suffer can make a few better choices for YOU!

Check out all posibilities!!

You don't have to suffer. There are so many treatments available.

Good Luck,Happy Hunting!!

Patty

__________________

andie1414 · 04-16-2003, 11:13 PM

ok. I have just had my first period since starting the glucophage, can you say 'PAIN"? I have endometriosis. I'm supposed to be on low orthotrycyclin. But have no guts to do it while getting adjusted to the glucophage so I decided to ride this first period thorugh. needless to say next month I will be trying it. i forgot periods could be this hard. I have always had periods every month but they have not been this ugly in a long time. i'm wondering if the glucophage can make this happen? anyone know?

kellysms · 04-18-2003, 12:59 PM

I had HORRIBLE periods---cramping, excess bleeding, etc. for a couple of years, writing it off to me getting older (I'm 37) and having PCOS and hypothyroidism.

I finally had had it, and went to the doctor who found what they thought was a polyp in my uterus. They went in to have it removed surgically, it turned out to be a fibroid, and I am back to feeling great! My gyno said that the fibroid was being supplied by this huge blood vessel, so naturally I was bleeding like crazy.

Before, I was taking 800 mg ibuprofen three times a day and using those heat pads. Now I don't even need a single Advil! I swear, it's like not even having a period. I am on BCP's. Just make sure when you have extreme symptoms that you get it checked out, and don't pass it off as something before you know for sure...don't do what I did! I really regret not having sought treatment earlier.

Kelly

Lina Lam · 07-05-2003, 11:44 AM

I have been having this severe backache in the morning. Does that mean it is due to the PCOS? I have been diagnosed only recently but don't know what I should do.
My doctor is saying that there is no cure but a long term battle. I will be going through HSG x-ray to check if my fallopian tubes are alright so that my doctor can proceed with Clomid to assist me in getting another baby.
And the pregnancy will also ease the backache. Is that true??

Pls. advise me if anybody has more info to this. I need your help cysters!

blondie816 · 07-15-2003, 03:59 PM

Ladies I need some advice. Like all of you I am PCOS, endo and chronic- long- heavy- painful periods take all that and toss in TTC and you've got me.

Was on the pill for 11 years to control endyo and PCOS. Now off for 1.4 years (TTC) with no luck but with LOTS of bleeding in the process.

Had insulin tested and no longer on Gluc because that part is stable now.. who knew?!?

BUT- this is my past 6 months. No pd 2 mos, bled almost 2 mos. Dr started provera said if I didn't start normally to take monthly but make sure not pg first. Never had to take second dose because I started AF no prob. Bled 2 wks stopped- not too bad.

Same for 2 more mos. with gradually heavier and more painful bleeds.

This month I only got a 1 week break betweek last AF and this one and now have been bleeding, painful, HUGE clots for 3 weeks with no sign of stopping. So I called OB. Nurse panicked and got me in today. Saw new DR in pratice, mine on Vacation.

So he wants to do 10 days of prometrium (natural provera sub) then do clomid after that then do blood work to see if I even ovulated.

Does this sound ok? I am bleeding "fresh" blood constantly with HUGE clots (look like tissue samples) hopefully progesterone will stop this soon- but....

Should I seek a new pratice or does it sound like they are doing ok by me? I am parinoid because I think I heard this Dr. and nurse saying that someone, I assumed me, was just there for attention.

HELP ME!

Pattyannruss · 07-15-2003, 10:44 PM

That sounds like the standard first step for non stop bleeds.
You need to discuss FIBROID TUMORS with what ever Dr is treating you.

This is the #1 reason for long,non stop bleeds.(endo is secondary) Please don't worry too much, these fibroids are usually easy to take care of if the Dr is persistant.

Research on line so you have a better idea of what you could be dealing with.

I pray all goes well for you soon.

Patty

Akashamoon · 08-07-2003, 12:49 AM

Blondie..if you feel like your Dr. isnt caring about you enough or thinks all you want is attention,please find another one!!i almost died last year of severe bleeding like you described and clots the size of my hand!!!I became so anemic that I couldnt even walk and just to roll over in the bed made my heart speed up..I went to the GYN and they gave me a hormone(dont remember what it was now) to stop it but it didnt work..finally i was fed up and went to my gP which sent me directly to the hopspital...I needed several blood transfusions a DNC in which they found a pollop(sp?)and more hormones...I was there for a week and a half...I now take medroxyprogesterone every other month to bring on a period or i will go 9 to 11 months without and then bleed out for 3 or 4 months at a time,and each time it gets more severe..I don't want to die this way and so I want you to be careful...this is dangerous and you need to get help,o.k?You can PM me if you want to talk in private,I would be glad to talk to you more..Hugs!!

Tammygrrl · 08-18-2003, 10:19 PM

http://www.wdxcyber.com/npain10.htm

HeatherCortez · 08-19-2003, 11:38 AM

Isn't it true that sometimes PCOS patients have pelvic pain as well....(not trying to wear the name out, but....) Dr Samuel Thatcher, says that sometimes women with PCOS complain of pelvic pain.

I don't know how true it is and don't know how many of you have pelvic pain. I do however...and the funny thing is when i asked my dr (a midwife who diagnosed me) said "it's just spasms with your cervix, no big deal"....i'm like no BIG DEAL? Your not the one who has it now are you:?