For those with pelvic pain or non stop bleeds - Page 5

meandabby · 06-13-2006, 12:24 PM

I was dx with pcos 6 years ago. since then i have been on and off all kinds of things. af has been missing for 4 years except for like 2 mo earlier this year. about 4 mo ago i stopped all hormones but continued metformin (2000mg 2x daily). for the last 4 years all the drs have been telling me that because of my history i was never going to be able to get af without some kind of pill. not really sure why but 3 days ago out of the blue up pops af. its not been that bad. i had forgotten what it was like and it has grossed me out but no really bad pain. so i was talking to my mom (who is a rn and a rn educator) and told her about af and she said that it may just be that the dr were telling the truth at the time. she said that she was told when she was a kid with asthma they told her that she may grow out of it cause the body kinda like recycles itself every 7 years. not sure if this is true or not and if it is if it would effect pcos but it would kinda give new hope. i am not putting much stake into it but i do have a renewed hope for my fertility future since the drs were wrong about af they could be wrong about my fertility too. if anyone knows anything about the body recycling itself every 7 years please let me know.

Foxy · 06-13-2006, 08:43 PM

Hi,
I've been having chronic pelvic pain (left bodom) for about 3 -6 months now. I just got it checked out yesterday cause I thought I might have a cyst and nope nothing there. I have not yet been diagnosed with PCOS but have alot of the symptoms. Are there any other lady's with the same problem? Pain but no cyst? Yes, then where is the pain coming from?

WKU_NURSE_21 · 07-16-2006, 08:54 PM

It is good to hear from someone else who is going through this condition, I have experienced the blood clots before and of course It scared me to death becuase I didnt know what was going on. I hope everything worked out for you! -Sarabeth

Quote:

Originally Posted by blondie816

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!

Ruby_54 · 07-19-2006, 11:17 PM

Hey everyone, first time posting but have been here before. Well I want to know if anyone else has constant pain from pcos? I have a constant pain(i can actually feel my ovaries hurting) in my lower back, abdomen, down thighs, and up back and my docs just keep giving different anti-inflammatories and Tylenol #3(which aren't helping). I can't bend down to pick things up, lift legs up and my heat pad is my best friend. I am taking demulen 30 bcp and gyno said that should help but it hasn't. It's gotten so bad that now I'm off work on sick leave for 4 weeks or maybe longer depending on if I feel better. Has anyone else had to take time off work? I had a laparoscopy done and no endo was found just pcos. I'm so depressed dealing with all this pain so please let me know of your experiences.

crazygirl26 · 07-29-2006, 07:32 PM

i just recently had a laperoscopy done to remove some uterine fibroids (he also did some other stuff while he was in there). i have chronic pain, but have very light periods. 24 hours max and NO heavy bleeding.

my ovaries are enlarged which my doctor thinks that is what is going to continue causing my pain. i wasn't looking forward to that diagnosis since i thought that once the tumors were removed the pain would stop. this has not been the case. pretty disheartening since i could easily miss 3 days or more of work a month because of the pain. it's a never ending cycle.

dr. says my next option to to seek pain therapy since it has become dibilitating. also recommended acupunture. has anyone gone through this?

whittydoodle · 08-19-2006, 08:47 PM

yeah I have pain in my lower abdomin sometimes too but I don't have really heavy bleeding it is heavier than normal flow but not bad enough that it bothers me too bad but I have wondered what it is from. Any info on this would be great. I don't have cyst either that I know of I have not had an ultrasound or anything.

shellbelle · 08-21-2006, 09:05 PM

Hi
Ruby 54 ... yes i know how you feel. Its affecting me like that too. My obgyn said it was the ovaries and the weight of them. I am just taking co codamol which dulls it for a bit but surely it cant go on like this forever. I am looking for work at the mo but really cant do alot because of the pain.

I am doing to try for DLA- disability living allowance.
trust in my friend the hot water bottle and God.
Pm me if you want.

Shell

SouthernGal32 · 08-23-2006, 09:05 PM

OH!! THE PAIN is REALLY breaking me down! I can't find ANYTHING that helps but a hot bath seems to soothe a little - I can't live in the bath forever - now can I??? Ruby 54 I have the exact pain every day almost nonstop. Sometimes I want to just die because I can't take it - That is a terrible way to live and feel. I have Hashimoto's Thyroiditis also and when I told my endocrinologist about the constant pain in my ovaries - he said " How you know where you're ovaries are? You don't know that!" He is from Africa or Zimbabwe(sp) I think. But anyway WHAT??? I know where the heck my ovaries are - -does he know where his testicles are???? I mean c'mon - give me a break!!! I can't get anyone to prescribe me anything for pain - my OB/GYN says "oh just take some Aleve" - YEAH RIGHT that'll do the trick, it doesn't even take off the edge! My husband says I should kick him where the sun don't shine and tell him "OH just take some Aleve!!!" But, really, he is a great doctor and if not for him recommending all the bloodwork he did I could have gone even longer than I already have not knowing about the Hashimoto's Disease. I just think that if you are TTC and can't get on the Pill then you are just OUT OF LUCK on the whole pain deal and just have to live with it. That MUST be the case, because I have researched pain management for PCOS and found NOTHING. I wish someone could offer some advice. Just hearing that others are experiencing the same thing is really helpful - believe it or not! I thought I was the only one for some reason. But it is everyday without fail, sometimes ALL DAY LONG NON STOP and other times it eases off after the morning passes and comes back in the evening. It hurts in my lower back, in my ovaries, my thighs even hurt - sometimes it is so bad it makes me super nauseated and I also have very sore joints and muscles from my Hashimoto's. I have had to miss work and have some very important upcoming changes within my company which will require me to travel and take some classes and I am terrified of messing up or missing out on something and losing my job - I am in so much pain and sooooo very stressed out!!!

kyeandethansmome · 09-02-2006, 06:46 AM

OH my , i have the same pain,it is in the floor of my pelvis,lower back,hips and thighs. Sometimes it is so bad i just lay on the couch and cry.It has gotten so much worse in the last six months.Its and throbbing achey pullsating and sometimes stabbing pain that no meds will help.My doc says it is just the way my body is and there is nothing they can do about the pain,just take aleve or advil.yeah right, i have to little boys and i cant live like this.My af is heavy and always last 7-8 days ,last one i had was terrible,big clots (8-18 to 8-25).then today spotting(9-1).Well at least i know i am not the only one who suffers from the pain in the pelvic.

ladylongie · 09-02-2006, 09:03 PM

I have had the same horrible pain for 11 years! what has worked for me is taking a combination of muscle relaxants like soma and prescription strength ibuprofen but I now have stomach problems from too much. When it gets to be more than I can bare I get toradol injections from the er. I've been lucky that the dr's dont really question me cuz if they did they might think I'm a junkie. Also it sounds gross but if you dont mind smelling like a pickle, atowel soaked in vinegar under a heating pad can make the cramps less intense. If you are not ttc you can try yasmin. I take 3 months continuously and it has made af much more bearable. I used to get it really bad, it lasted up to a month and I'd have fist sized clots (gross!) and I was severely anemic and there were times when I could hardly get out of bed cuz I'd bleed through just trying to get to the bathroom. Also the yasmin really cleared up my complexion and I didn't have the strong junk food cravings that I had before.

Sunshine4 · 09-22-2006, 07:45 PM

I am a 58yr old woman. For the last three months I have had constant lower back pain, my hips ache, my upper thighs ache and now I am having pelvic cramps. I am concerned about ovarian cancer. My aunt died of it and my mom had breast cancer. I had an ultra sound done. They could not see my ovaries. I have had 3 children. I am a mess, and so scared. I had an MRI for my back pain, and have some degeneration, due to my age. I was diagnosis with HPV last month, and had a biopsy done, and it was not cervical cancer. I don't know what to do? Has anyone else every experience the following: hips ache, lower back pain, period type cramps, stomach is bloated. I have been unable to take my daily walks so I have gained 5 pounds. I have even tried the Tens for my back with no relief. Help!
Sunshine4

BrenDevMom · 09-27-2006, 02:46 PM

I have been having serious pelvic pain!! I called the Dr. yesterday and the NP said that it shouldn't be my ovaries causing the pain, but it may be my bladder. (I have a bladder that is too small and have tried many medications. Then the Dr. put me on Enablex samples for a month and they worked great. Until I found out my insurance company refuses to pay for them and they are $140 per month!!!) Anyway, the NP gave me Tylenol 3's with codeine and I started taking it last night.All it did was make me feel high and give me weird dreams, but it did knock the edge off the pain slightly. The pain is so intense and in my back and legs and hips just like some of you other wonderful ladies. I lay around with the heating pad all the time too. My Dr. doesn't seem to understand. He says to take ibuprofen. Yeah, that really helps!! Meanwhile, I take so much ibuprofen that I am going to lose a liver if I don't stop, between pelvic pain and headaches. I have two small children. I don't have time to be in pain. I am out of Yasmin and never got a refill. My periods are very light to nonexsistent. And they skip months all over the place. I will go back on the Yasmin after my next pd, whenever that may be. There has to be something that we can do. Why do Dr.'s still feel that pain is 'in a woman's head?' and that we don't know our bodies.

Purple_monkfish · 10-21-2006, 05:36 PM

Well here's my problem... I could do with some advice.

I started menstrating at the age of 10, and since then things have just gotten worse.
By the age of 12 I was having to be on painkillers (ponstan in fact) and having to come home from school because I was in too much pain and flooding (tmi.. but thank god our uniforms were darkly coloured).
For years this continued, the painkillers helped a little... but I passed clots and bled so heavily for two days I felt like I was going to die. At times i'd feel quezy, i'd shake, i'd get hot and cold flushes... these symptoms got worse and worse as I got older. The painkillers eventually stopped working and I had to be put on stronger and stronger pills, till finally I ended up on medication designed for people with IBS! Only able to take 3 of these a day, they did help with the pain.. they just didn't last long enough to make my life easier. I'd stay in bed for the first two days of my cycle and sleep.. because it was all I could do to stop the pain... unconciousness was good.
The pain itself had become excrutiating... unbearable agony that nothing seemed to relieve. The pills made me pretty much numb for an hour or so.. then the pain would start again. I'd be curled up sobbing, completely helpless and unable to even stand. I bled so heavily that going to the toilet gave me the shakes... I believe it was a reaction to the shere amount of blood loss. I bled thick, black clots and bright red blood by the bucket load... having a shower became like the scene from psycho! (what wonderful imagry).
I went to the doctors several times, begging for something to help. They put me on the pill, which made me feel sick. I stayed on it for a few months but I felt odd... my periods were a little lighter but nothing major... I went off the pill and bled for 3 weeks non stop. Terrorfied I went to the doctors again, and they put me on progesterone. Of course, nievely believing that doctors knew what they were doing, I took the pills... and for a furthur two weeks I bled... the bleeding became so heavy and so painful I was sure I was going to die. I ended up in a&e convinced I was hemhoraging. They told me to go back to my doctor... even gave me a note telling my docs to admit me to a specialist... which my doctor tore up in front of me!
Fed up, I finally managed to bully a different doctor into sending me to a specialist privately.

I was diagnosed with PCOS last August. My hormone profiles were low.. very very low.. but combined with cysts on the U/s and my free testosterone being almost 90% of my overall testosterone... and of course FSH and LH being reversed... they told me I had PCOS and put me on Metformin.

Met was great! I had only a few days of discomfort going on it and soon enough all my problems melted away. My periods became more regular.. where once they had been every two or three months, now they were every 28 days! they were heavy yes, but nothing compaired to what I was used to... the pain was next to nonexistant. However... there was one problem.
If I didn't take the medication as I was supposed to, and I do tend to forget... I would pay dearly. Missing even ONE pill would undo all the good... skipping medication meant that when my time of the month rolled round.. the old agony would return... My poor partner had to endure me crying in pain and knowing he couldn't do a thing to help me.
On top of this, while taking the pills normally I still felt pain... not af pain... but occassional stabbing pains in my sides.. near an overy or kidney... a pain that felt almost... like ovulation. It could last anywhere from a few minutes of seering agony, to hours of unbearable suffering. It was like having an internal blister that had burst (a cyst?)... every movement hurt... even sitting still throbbed... I'd never had these before I started taking met...

Another thing they found when doing my internal, and indeed every subsequent one they've done since I fell pregnant, was that theres some sort of inflamation behind my uterus. It's so painful there that sex can be uncomfortable at first, fingers are right out, and it's impossible for a doctor to do a full internal without me screaming. They have no idea what it is, and so far, noone has bothered to make any guess.

Anyway...

I started researching into pcos a lot more... and found that symptoms like mine are NOT associated with the condition. This bewilders me a little, as the met seems to work... what the heck is going on?
What is this inflamation? could it be a cyst? or could it be something else?

When I asked my specialist he mentioned that the pain and all that might be emdo... he wanted to do a few tests... but once I was diagnosed with PCOS my mother in her infinite wisdom decided it wasn't neccisary for me to have surgury as well... bah...

For a year i've battled on... yes my symptoms are very much decreased... but for how long? and more importantly.. have I been given the correct diagnosis? Is Emdo likely or am I just being paranoid?
If pain isn't part of PCOS... what the heck is it?

Despina · 11-18-2006, 02:00 PM

Hi ladies ! I m a newbie.Glad to have joined u all!I was diagnosed with PCOs seven years ago and i've been on the pill for about ten years.I quited last month and started glucophage and hoping for my period to come but i'm having constant bloating and cramps all the time.Has anyone of you experienced this symptom?is it due to glucoaphage?the only good thing about it is that for the first time after stopping the pill i have no spots!!!Help me please!

glassofh2o · 02-09-2007, 08:40 PM

I've been having pelvic pain, but still not really sure what it is. I'm just new to PCOS and am still trying to figure everything out. Is pelvic pain common with this "syndrome"?