Endometiosis??? Cysts on Ovaries??

GardenGhostFebruary 28, 2004

I have a doctor's appointment March 17 to FINALLY find out what is really wrong with me. They've diagnosed me over the years with all sorts of things, and I always thought they were wrong. Now I'm pretty certain. One of their diagnosis was "spastic colon". They advised that I change the foods I eat (more fiber, no popcorn or nuts, etc) and avoid stress. yeah, right, whatever! The diet change didn't make a difference. And I feel like my life is not all that stressful anyway. It's actually less stressful now then it was 8 years ago when the symptoms began. But now the problem is worse--much worse.

About 8 or 9 years ago, I was having severe pain on my left side, sometimes in my back too, accompanied by kidney infections frequently. So that was their diagnosis - Urinary tract infection. So they cured the infection, but the pain still came and went. Another doc said "spastic colon". And another said "diverticulitis" (another colon problem). Mind you, they did no exams and no tests. They based their opinion on my symptoms and their experience.

I did everything they told me and the pain became more and more frequent over the years. I haven't had a kidney infection in a couple of years, so I'm pretty certain my kidney is not the problem.

But now the pain is constant. I've also begun bleeding almost non-stop. At first I thought I was going thru menopause. I'm 40, so it's about time for that nonsense. This past month, I've had about 4 days without bleeding. I've been in a great deal of pain and there doesn't seem to be any rhyme or reason to it. There doesn't seem to be anything I do or eat that causes it.

From the pain or from the blood loss, I'm fatigued everyday. Occasionally there's a good day, like today, where I don't feel like I wanna sleep all day. But it's wearing me out! That's really why I called doc and made an appointment. The pain I've endured for years. So I could continue to ignore that. The bleeding is a nuisance as I love to swim and joined a gym for just that purpose and have only been able to use it four days this month. But being tired and napping the day away is NOT me!! I've begun taking Iron pills and eating Post Raisin Brand (60% iron per serving) since I figure I'm probably anemic.

So I'm wondering if this sounds like symptoms of cysts on my ovary or endometriosis. Have any of you endured anything like this? If so, how were you cured--pills or surgery? If it turns out I must have surgery, how long will I be bedridden? And how long will it be before I'm back to normal? Any information and advice is appreciated.


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Casper, I hope you aren't going to one of your previous doctors who never did any exams or tests. You need to have a thorough evaluation by a doctor who is determined to find the root cause of your problem(s). You are young and have suffered too many years to be playing a guessing game. I wish you well... ~abreeze

    Bookmark   February 28, 2004 at 7:38PM
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If you have a cyst on your ovaries, it should show up on an ultrasound. A friend of mine had one, they advised her to get more exercise, like walking, and come back if she didn't feel better after a few weeks. If it's a large cyst, it may have to be removed surgically.

The bleeding does not sound good. I think you should get to a doctor sooner than you mentioned. Tell them you NEED to see a doctor NOW---not 2 weeks from now.

Take care of yourself, if they don't run some tests on you----find another doctor. You're responsible for your health and sometimes you have to push other people to get to the root of the problem. Keep us posted.

    Bookmark   February 29, 2004 at 3:29PM
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Wow. Have you had a thorough physical to establish a baseline? Have you seen a gynecologist? Somehow, this doesn't sound as though it should be such a mystery to diagnose.

My suggestion would be to call the doctor's office and describe in clear terms the amount of bleeding that you are experiencing. It helps to try and quantify amounts. For instance, how often do you have to change a sanitary pad or tampax? Is it saturated?

Be firm. You need an appointment now, not later. Try not to get ahead of yourself in terms of envisioning all sorts of scary stuff, it isn't helpful. We can help you negotiate the healthcare system if need be. Go get em, girl, and keep us posted!

    Bookmark   March 4, 2004 at 7:38AM
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I do have an appt with a gyne on March 17. That's the soonest I can see one in this town. My only other option is the emergency room if things get too bad before the doc appt.

I was hoping someone with experience with ovarian cysts or endometriosis might have some insight and share their experiences with it.

I did some research online and printed out a questionnaire of possible questions the doc will ask. So I've completed the questionnaire and jotted down all my symptoms as well as a chart of my menstrual cycle for the last four months. So I'm pretty prepared for the appt. But I'd love to hear from people who have endured this agony and how the doc handled it. Anybody?


    Bookmark   March 6, 2004 at 11:51AM
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sammy zone 7 Tulsa

There are too many things that can cause pain, that I cannot help you. I agree that you may want to go to the Emergency room if it gets real bad. Sometimes their referral gets you a doctor immediately. The good thing about getting a regular physical is that they may see you sooner. You may call daily and ask for cancellations.
I hope you keep us posted.

    Bookmark   March 7, 2004 at 7:11PM
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I'm not asking for any of you to diagnose me. I've been to several doctors over the years with this problem and don't feel like any of them have diagnosed me properly.

All I'm asking is: Have any of you had cysts on your ovaries or endometriosis or anything similar? If so, what were the tell-tale signs? Any input from experienced sufferers?


    Bookmark   March 7, 2004 at 7:21PM
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I had endometriosis. My symptoms were that I had very painful periods the first day of my period. The older I got the more painful it was and my flow was heavier. The only relief I got was with a hysterectomy. I didn't suffer any pain between periods and my periods were regular. My ovaries were healthy and I still have them. I had the hysterectomy when I was 36 years old and it was the best thing I ever did.

    Bookmark   March 13, 2004 at 7:20AM
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I am so mad!!!!! I just went to the doctor's office and waited for 15 minutes! THEN they call me up to the window to tell me he's in surgery and won't be seeing me today. I've been waiting a month already!!! And now they tell me, sorry, can't help ya. The earliest next appointment they have is April 21!!!! Over a month away!!! I told the lady I could bleed to death by then!! I couldn't even see a nurse!! Just the receptionist. She went to see if a nurse would see me and the nurse said that she couldn't do anything for me, I'd have to see the doctor and they're real sorry I'm bleeding so much. Bleeding so much? I explained that in the last month, I have only had 6 days where I WASN'T bleeding!!! I'm soooooo pissed I'm crying!! I didn't want to go to the doctor anyway and get nekkid and be poked and prodded!! But I was a big girl and I went and they should have the decency to at least TALK to me!! So here I am bleeding like a stuck pig and they say sorry, but we can see you in a month.

I hate going to the doctor and I don't know if I will. I'm just so pissed!!! They treat me like I'm insignificant. Like losing gallons of blood a month is ok. This is the same clinic that thought it was all in my head 3 years ago when I kept complaining that my side hurt. They had cured the kidney infection and assumed I was just there to get drugs I guess. Since the infection was gone, there was no reason I could still be in pain. I'm so furious!!!

I just hate this feeling of vulnerability and uselessness, like there's nothing I can do about it. As I sit here, whatever it is, is getting worse, and no one seems to care, since it's not their problem. Where are the doctors like the one Billy Ray Cyrus plays on "Doc"? I swear I haven't seen one!! And the funny thing is, they want their money up front. So they have your money, whether they help or not. And you don't get a refund if they don't help you. What's wrong with this picture???


    Bookmark   March 17, 2004 at 3:31PM
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So sorry for your terrible office visit! Aren't you near another doctor----even if you have to drive an hour, it would be worth it to get some answers. You really need to see a doctor----and if you can find a female gynocologist, it would be a good thing.

    Bookmark   March 18, 2004 at 5:19PM
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Casper, can you go to a different doctor? You said you went to a clinic and they wanted you to pay up front? I've never had to pay up front, at least not pay in full, unless I was ordering supplies like orthotics.

Please ask around for a referral to another doctor and go see someone else ASAP.

Let us know what happenes...


    Bookmark   March 20, 2004 at 11:40PM
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I'm in a town filled with doctors. And I've seen several before all the bleeding started. I've been in pain for years. But when it first started, it was infrequent. For every doc I saw, I got a different diagnosis. But what it mostly amounted to was "stress related" or I got the impression that one believed it was "all in my head". A couple of docs told me it was simply because I am so overweight. And honestly I believed that. So I worked really hard in the last year and lost 30 pounds. I began working out at the gym in late November. The bleeding problem began in early Nov. so I know the gym has nothing to do with the change in my cycle. Also, since losing the weight, the pain has only gotten worse, not better. It's no longer infrequent but rather constant.

Jenn, in our town, many of the offices require that you pay the minimum office visit when you sign in to see the doc UNLESS you are an established patient. Wherever I go, I would be a new patient. New patient office visits are about $30 higher than established patient fees too. And if I go to a gyne, their fees are even HIGHER!

A friend of mine told me about a new clinic that opened here recently, so Monday I'm gonna call and see if they can help me. I'm certain someone can. It's just a matter of finding the right person. I can always go to ER if it gets too bad, but I want to find a doctor I can see anytime I need to. I do not intend to go back to the clinic I used before. I'm so furious with them and so frustrated that they didn't really seem to care about my health. They didn't take me seriously and allowed this condition to escalate. So I want a new doc I can trust and get to know and establish a history with.

Whenever I find out what the problem is, I'm getting a copy of the doctor's report and carrying it to the other clinic to prove to them that it wasn't all in my head. Perhaps the evidence will inspire them to slow down and actually listen to their patients with an open mind so they can actually help in the healing process. And also I just wanna say "I told you so!!!" LOL

Thanks everybody for your information and concern. I appreciate all your help.


    Bookmark   March 21, 2004 at 8:11AM
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I couldn't find the clinic that a friend of mine told me about. So I called doctors' offices Tues. and finally found one who could see me. They squeezed me in Thursday!!

After a very thorough exam and asking lots of questions, the doc discovered a very large polyp on my cervix which is causing the bleeding. Most polyps they can just clip right off, but he told me that this one is just enormous and I may need hospitilization. He left the room and came back a few minutes later. He had called a gyne surgeon near the hospital and scheduled me an appt for Monday. He said the surgeon is prepared to operate Monday and I should be prepared to go under anesthesia and stay in the hospital if it comes to that.

Should I be concerned? I mean, man, this is fast!!! Remember, the clinic I've been going to won't even see me until April 21!! Already I've seen Dr. Harris and he's scheduled me for surgery!

He did say that the pain I've been having for years is not related to the polyp. So he scheduled me for an MRI/CT scan tomorrow. He wants to check my ovaries and uterus BEFORE I see the gyne to see if there's a major problem which might require a hysterectomy.

Dr. Harris was very nice and took care of everything. He answered all my questions and seemed so concerned. When we were thru, I was at the counter checking out and they informed me the MRI alone would run me $1300!!! I asked "How am I going to pay for that!" I have no insurance. Dr. Harris was apparntly behind me when I said that. And he walked up to me and said, "Don't worry about the financial part of this. All the services you're having done are going to be billed here. We'll set you up an account, and if all you can pay is $5 a month, that's fine. Let's just concentrate on getting you healthy." Well, of course I can pay more than $5 a month. But wasn't that extraordinarily nice? Most of the offices I called wanted $80 up front, before I even saw the doc. These people didn't ask for a thing up front. And then I could have paid only $5 today and left.

They also scheduled a follow-up appt with me for 10 days from now. So that's today's appt, an appt for an MRI tomorrow, an appt with a gyne surgeon Mon, and then another appt with Dr. Harris on April 4. All this in a two week period, when I'm a new patient while my regular doctor cancelled my appt which I waited 4 weeks for and scheduled me one for another 5 weeks later (april 21). Before my regular doc can even get around to looking at me, my new doc is gonna have me cured! He's not wasting any time. He said enough time has already been wasted. He couldn't believe that none of the other doctors I've seen ever did a pelvic exam or suggested an MRI or a CT scan.

So perhaps tomorrow I'll know what is causing all this pain I've endured for years because I believed the doctors when they told me it was stress related. I'll let you know what I find out.


    Bookmark   March 26, 2004 at 1:36AM
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I am happy to report that the scan showed I have a large kidney stone. I got to see the scan even! It looks to be a big chunk about quarter sized. The technician pointed it out to me. But he said he couldn't tell me if anything else was wrong. The doc would have to search for anything else. He said a kidney stone blatantly shows up, so he knows that's what is there.

It's funny that everytime I asked a doc if I had kidney stones, I was told that if I had stones I would KNOW it. The pain would have sent me to ER. And here I have a quarter sized one. I've been in a tremendous amount of pain, but I'm no weenie. I figure if it isn't like the last stages of labor, then I can bear it. No one ever suggested a scan. I could have had a scan years ago, had I known to ask for one, and wouldn't have had to endure all this pain.

And all this in just a few days, when my REGULAR doc can't even see me for another 4 weeks! I think I just found my NEW regular doctor!

    Bookmark   March 26, 2004 at 6:34PM
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Hi Casper,
I normally see you over on GW, but ran across this post. I know its a bit late but I hope you are happy with your doctor! I gotta warn you, this is long!
I'm 28 years old, and have had a hystorectomy that removed my uterus and cervix when I had just turned 27. My ovaries and tubes are still there, which is both a blessing and curse. Its a blessing I don't have to take HRT, but its a curse in that I still get big ovarian cysts, have wicked mood swings, hot flashes, night sweats, and still run through my irratic cycle. I never had a "normal" cycle, LOL. I understand what you mean by the feeling of bleeding to death, and being treated like all this is in your head.
My first period was when I was 12, it lasted 17 days of painful heavy bleeding, my next started about 2 weeks after the first quit. I told my mom, she said she had heavy periods and it ran in the family (she had a hyst when she was in her 40s, and then the dr said it was late)
By the time I was 15 I realized there was something REALLY wrong. Went to Mom's gyno, a man, and he treated me like I was a stupid kid who didn't know what was a normal period and what wasn't. I was always tired, bleeding for 3 weeks with a week or 2 off (if I was lucky), and had this Dr tell me I was fine! Anemic, pale, exhausted, yup, normal 15/16 year old. Dad said I was just being lazy, but I felt so sick and so tired! All I wanted to do was sleep! I was givin pregnancy tests to see if it was a false pregnancy (had one test come back pos, even though I was a virgin). Was givin birth control pills, which made everything worse. I had a laproscopic cystectomy and a d&c at 16. Helped a very short time, then things started up again with a vengance. The Dr acted like I was wasting his time and I was a weak wimpy girl. I was checked for all kinds of illnesses and diseases, and nothing was found.
SO, I Stopped seeing the dr for a few years. Suffered with constant pain and almost endless periods. I hurt so much all the time, the few times it wasn't there it felt like something was missing. Does that make sense? Maybe not, but maybe you can understand that too.
When I was 21 I went again to a Dr, a woman!, who walked in and said "Oh my god! How long have you been hurting like this!"
I was so happy to finally be believed!!
So I started seeing Dr Berry. She is a great Dr! I hated going through all the tests again, and said I was tired, I just wanted a hystorectomy to be done with it. I was too young, heard it all the time. Also heard how it was a good chance I could never have kids.
Had a second d&c at 22, as well as another lap. No real help. They never diagnosed it as endometriosis, but couldn't find a source other than the cysts were creating extra hormones.
I was so frustrated. I knew Doc Berry was doing her best, but it is my life, and it felt like I would just bleed it away. Decided not to go to the drs for a time again, then it got worse again. Had to wear depends and I was oftentimes scared I'd actually bleed to death in the night. The dr said some of my contrations during my period were as strong as the last stages of labor! All the work and nothing to show for it! (well, nothing anyone wanted to see )It was terrible, and it felt like I was going nuts.
I was givin a shot of Lupron depot, which shut my ovaries down totally, medically induced menopause at 23! It was an awful awful thing, my hormones crashed, and I kinda went loopy. Sure I wasn't having my period, but after 3 shots I felt out of it, and was treated for depression and suicidal thoughts. Had to have counselling and wasn't givin anymore lupron(which is good! It was awful, and if I'd realized that sever depression had been a side effect I might not have done it, then again when you're to that point any relief is good).
When I was 26 I was given a LEEP, which is a scraping of the uterus with an electrified loop, because the dr found sever dysplasia on my cervix. I also had to have an endometrial biopsy. WOW did that hurt!! I agree with the other ladies in other posts about how painful that was!!
Had my third d&c shortly after due to constant bleeding and pain, had dysplasia found inside the uterus.
I had talked with Dr Berry about after the d&c if it didn't work having the hystorectomy. Two weeks after the d&c my period was back and out of control. I called the dr to tell them Mr Monthly had returned and the next day got a message on my machine about my surgery had been scheduled.
Surgery? Yup, Dr Berry had finally agreed to do the hysto
I was so relieved! 15 years of blood and pain were over on January 29, 2003. Would I have it again? Knowing I can never have children and the realization of that is an ache in my heart?
Without hesitation.
I can't believe how much better I feel! Its like I'm a new person (in some ways I am) and I can't get over how much I missed out on due to constant pain and periods! I have some down days about not having kids at all, but over all its so worth it. I'm happy, healthy, able to garden and have a great time!! I'm not tired or weak!
When you see your dr ask about Polycystic ovary syndrome. Its a disease where the ovaries create lots of little cysts and mess up everything. Its not what I have/had but a friend has it. Her syptoms were a lot like yours too.
I hurt so bad it hurt when I would eat, too much pressure from the food, sometimes it hurt to breathe even.
I'm a new woman! A free one!! LOL!! :)
I hope your dr helps you!! It took a long time, and a lot of pain, but I finally got the help I needed!
Please keep us updated on your dr and how things are going!!

Bright blessings!


    Bookmark   June 15, 2004 at 10:29PM
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Wow Lenore, you've really been thru it!! That must have been just awful, knowing something was wrong but no one believed you. It infuriates me that we walk around in our bodies and know our bodies, and they tell us nothing is wrong!

As it turns out, I have multiple problems: Kidney stones in both kidneys (which I'm passing--yes, painful, but at least no surgery for them), a large cervical growth which was causing lots of bleeding, breast lumps in both breasts (isn't it nice how my body does everything symmetrically??), and diverticulitis, which they say is causing the intense pain I'm in.

Dr. Harris wanted to schedule surgery right away for the cervical polyp, but he told me I'd just have to learn to live with the pain from the diverticulitis. Live with the pain????

Well, Dr. Harris quit me because I wanted to get more info before jumping into surgery. I actually panicked at the thought of surgery. He told me I would bleed to death if I didn't have surgery and he wasn't wasting anymore time on me, I should promptly find myself another doctor, he quit. I was mortified!

I saw an herbalist who prescribed something that stopped the bleeding for 21 days, and greatly decreased my flows. Now I have very minor spotting between periods, but sometimes no spotting at all. So it was over two months after Dr. Harris quit me before I decided to see another doctor. I was so afraid of surgery and so afraid of insensitive doctors, and I just almost didn't see one.

I saw an ad for a free mammogram thru the YWCA Encore Plus program and I called them. They scheduled everything, and They are paying for my doc appts and mammogram and any biopsies I need. I saw a nurse practitioner last week. She verified that I several lumps in both breasts that are of concern. I have a mammogram on the 25th. She also said my cervical growth could be cancer. She actually said the "c" word, which freaked me out and I was crying there in her office. But she didn't get upset and quit me. Instead she tried to answer my questions.

She wanted to schedule me an appt with a gyne and I told her I wouldn't see anymore male doctors! So she found a female gyne for me. I go see her on the 29th.

I worry that it's cancer. Everyone I know who had cancer has died from it. And I know if I have it, it's pretty far advanced. So it scares me. But it's possible I can just have a hysterectomy and be done with it all. I have found no joy in being a woman all these years. Painful heavy periods since I was 11, migraines, etc. are just no picnic. But surgery terrifies me. The last time I was in the hospital was 19 yrs ago, giving birth to my only son.

I guess I'll do what I need to do, once I find out what that is. People tell me the not knowing is the worst. But actually, I find that ignorance is bliss. I'm not sure I want to know.


    Bookmark   June 22, 2004 at 8:59PM
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Lenore, Had simular problems you described. I had painful very heavy periods all my life. However I was always regular every 29-31 days and lasting 7-8 days for two months in a row and then one month of about 5 days with the first two days being hell and then almost nothing. When I say hell I mean bleeding so bad you have to change every hour if you were lucky. I would never go anywhere because almost always had bleed threw no matter what. The pain was almost always on one side, usually my right. Pressure in the lower back also. Thankfully I was very fertile and had three children. Had a hystorectomy when I was 38. Still have ovaries and tubes as you do. Removed very large growths (cysts) on both ovaries and cleaned them up as my gyn says. It was great and I finally started to feel better after many years of being anemic, pale and tired . Now the last 1 1/2 years I am feeling the same pain almost like I'm having a heavy period and I get b***hy blooted and constipated. Have also always had lumpy sore breasts that did not change. I feel like my bowels are getting even worse and my back is bothering me all the time. I"m not over weight and I get a good amunt of exersize. I'm now 42 and is it possible that the growths are back?
Did your s come back again? If so what were your options? Do the ovaries need to be removed or is it possible it's more of a colon problem putting this pressure on my back and ovaries? I don't know but I want to feel better again and my GYN is no longer around.

    Bookmark   August 8, 2004 at 3:13PM
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Casper: I too have a very large polyp on my cervex that was discovered during my annual pap. Too large to remove in the office. I have had a history of fibroids and also have cycsts (ultrasound showed) which they leave alone. I go in in 2 weeks to have it removed. My pap smear was normal. I'm just hoping that all it is a polyp and thats all. I wonder how they get so big. She removed one last year in the office.

Sometimes I just wonder why they just don't take all of it out and be done with it.

    Bookmark   August 26, 2004 at 3:15PM
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I am 47, and have many of the symptoms described by the prior posters. Severe ovulation pain, history of endometriosis,severe menstrual cramps. Now I'm spotting lightly for about 20-25 days in my 28 day cycle! I'm at the point where I am seriously considering a hysterectomy, they would take my ovaries because of the pain from the cysts on my ovaries (had ultrasound to confirm).One option was to take BC for the ovulation pain, but it wouldn't do anything for the bleeding or the endometriosis pain. I'm OK with having the surgery, but I'm worried about losing the estrogen that the ovaries produce. I don't know if I am just trading one problem for others. I've thought about having a laporoscopy for the endo and removal of the cysts............I don't know if they will do that?
Anybody out there with the same symptoms that had a successful outcome.

    Bookmark   October 31, 2006 at 1:13PM
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Momof4..........alot of women around your age start spotting all the time. It's from not having enough progesterone. I guess the estrogen builds up our uterine linings, and the progesterone lets it slough. If you don't have enough progesterone, you keep building your lining, and it's start falling off a little a time, causing constant spotting.
You might consider taking just a little progesterone. Some women swear by the progesterone cream, while others think it's hogwash.........but you could give it a try. I think it's alot gentler than the progesterone pill.
Good luck.

    Bookmark   October 31, 2006 at 2:47PM
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Thank you Catherinet for the info. I've taken BC Pills in the past, many years ago, and I didn't have any side effects. I know that BCP have progesterone in them, maybe they would help with the spotting......? Does anyone know if they help with ovulation pain? Those are my main complaints. My understanding is that the Endo is caused by too much estrogen, is that correct? Do BCP do anything to counter that?
Appreciate readers input.

    Bookmark   October 31, 2006 at 2:55PM
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Update........I tried taking the BC pills, but they made me feel so nauseaus, that I had to stop taking them.
My ovulation pain is getting more severe, I nearly went to the ER, but couldn't get out of bed. It always happens in the middle of the night, are there others that have the same experience? I'm somewhat fine during the day.

    Bookmark   November 30, 2006 at 3:47PM
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Hi mom,

Sorry to hear your ovary pain is worse. When I was spotting, my OB/GYN wanted me to take JUST progesterone. Estrogen builds your uterine lining up, and progesterone lets you slough it completely. Your problem probably is that you aren't sloughing it enough all at once, and it just coming off intermittantly.
I'm no expert, but I'm wondering if its our increasing levels of FSH that make our ovaries hurt. As our hormones drop, FSH goes up (follicle-stimulating hormone), and that really beats the ovaries into coughing up some more eggs.
It seems that some of us are just very sensitive to cysts on our ovaries. Do you feel that your doctor is doing all she can for you?

    Bookmark   November 30, 2006 at 7:39PM
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oh casper am wondering how your story ended...i too have waited for the stupidist reason, and do have the c (uterine stage 1, thank GOD) word. and of course started spotting again today after 2 weeks of bliss...see the dr on the 15th of dec...

    Bookmark   December 3, 2006 at 9:17PM
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Have a 4.5 cm cyst, that is what's causing my pain. Scheduled for a laparosc. in about 6 weeks, to remove it. Yes, I do like my Doctor, and I do think she is doing everything she can, at this time.

    Bookmark   December 15, 2006 at 1:39AM
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