Estrogen Dominant PCOS with Endometriosis and Benign Ovarian Tumor

[Cutiepatutie]

Hello Fellow Cysters,

I am new here.....Here is my story, sorry if it is long. I would just like to know if any of you girls have had the same or similar experiences as me. I am 32 years old with 2 children conceived naturally. I started menstration at the age of 10, have always had VERY heavy periods and severe cramping which caused anemia at a very young age. I was sent to the ER at the age of 14 for severe abdominal pain. It was a very large cyst on my right ovary that had ruptured and caused me a lot of pain and emergency surgery. I had many small ones as well. They spared my ovary since I was so young but said I would probably have a hard time conceiving children. I have always had very regular (timely) periods. As a teenager, my problems were mainly rough periods and aggresion. Once I hit 20 I went downhill. The moderate to severe acne started, the bladder infections, the in and out of the hospital for cysts that ruptured, Migraine headaches, PMS, mood swings, and all of the menstral problems I had already been experiencing since the age of 10.

I went to doctor after doctor looking for answers but PCOS was never mentioned. I was put on every antibiotic available and for long periods of time, which I know caused me a serious candida overgrowth. I was put on Accutane for the Cystic Acne. I was put on Steriods for allergic reations to all the other prescriptions, thank you KAISER!!!

I got married at 23 and was able to conceive 4 months later with my first child. I was so AMAZED that when I became pregnant, ALL and I do mean ALL of my symptoms VANISHED!!! I felt truly AMAZING!! I nursed for 5 months and felt great up until about 1 year after birth. I started to spiral downhill again ...Everything came back and worse.

Horrible Acne, all on each side of my chin (right side worse) and on the jawline at times. I started to have painful ovulation and intercourse. My sex drive went in the toilet and I just felt awful. I was then able to get pregnant a second time when my son was almost 3 but I lost that baby to early miscarriage. We kept trying and got pregnant again 4 months later with my second son, I was 28 then. Again, I knew right when I got Pregnant because ALL my symptoms VANISHED!! It was truley amazing. I seriously feel like I have a crossed wire in my pituitary gland or something. This hormone thing runs in my family of ALL girls......

I am now 32 and 5 years postpardum. Last year around this time I felt the worst I have ever felt in my life, you name it I had it. Pain when I sit down, painful ovulation, night sweats, heavy bleeding, constipation, Candida, major acne, muscle aches, depression (who wouldnt be?), headaches, heart palps, MAJOR hair shedding, that started while I was still nursing. Oh and I forgot to mention, I bleed for 6 MONTHS postpardum with my 2nd son, not 6 WEEKS, 6 MONTHS!! So I decided to go to an endocrinologist. He specialized in fertility which I didn't need but he was highly recommended. He did all the Bloodwork for hormones and guess what???? They were all normal, you know what he said? "You dont have PCOS, you aren't FAT!!!" I was so upset because AGAIN I have no answers, just all these awful Symptoms.....

So I saved up some money and went to a naturopath/combined medicine MD. She said that a saliva test would tell the whole story hopefully so she had me take home a month long test for my monthly cycle. I did it exactly as instructed. I sent it in and waited for her to call me. The results were, well surprising. My testosterone was Normal, my DHEA was low and my Estrogen output was on the high side all month long. But the shocking part was my Progesterone, it was at the bottom of the graph for days 1-14 and then on day 16, it skyrockets to off the chart, above 1000 (they couldnt measure it all) and then takes a nose dive at day 22. The doctor was flabbergasted. She didn't understand it....nor did I but I knew I was feeling it for sure (PMS city)...

My overall hormones showed estrogen dominance throughout the cycle except when the Progesterone was sky high. I became concerned because things just seemed to go from bad to worse. The painful intercourse, the hair shedding, the cycles started to get shorter, I was becoming lethargic all the time. I knew something was really wrong so I went back to my regular GYN that delivered my 2nd son and demanded answers. She gave me an exam and felt that my ovaries were enlarged and my uterus felt thick. She sent me off for an ultrasound. I went the next day for them to discover and large solid mass on my right ovary and multiple small cysts on that ovary and the left one as well. They were both enlarged and my uterus was 10x's the thickness of normal. They immediatly scheduled me a laporoscopy because my CA 125 was elevated as well. Cancer was a definately possiblity.

I went in for the surgery that week and they discovered an Ovarian Fibroma (benign) and multiple cysts along with endometriosis in the culdasac/pelvic area and outside my uterus, possibly around the colon but he couldn't get to it. So they ultimately removed the right ovary, but spared the rest.

The first month after surgery I felt really good. Then guess what, MR. LEFT ovary took over and lord, all my symptoms are back but I have completely cut out wheat and most all dairy and I seem to be less miserable. The hair won't quit and the acne still is there almost continuously except some months are worse then others, I am now developing scars because I am getting older. I can't seem to get out of this vicous cycle of hormone hell. If there is anyone out there that has symptoms like this, PLEASE do respond. Tell me your story, or what has or hasn't worked for you. I am very strict with my diet and try to excerise regulary when I am not knocked out by the anemia (menstration).

I feel very alone in this and just want to know what's wrong with me. I know it is PCOS and different then most women with this disorder but there has to be someone else like me???? Even the girls in my family have similar symptoms but theirs vary as well.............Thank you for listening!!! p.s. I begged for a hysto and they wouldn't do it. And I apologize for this being so long.......

[ABK]

Let me just say I'm so sorry to hear you go through all of this.

You know with PCOS it seems so standard in the books but in reality it isn't. Each and every one of us is affected in so many different ways. I can't say that I know what you're going through but hang in there.

Have you thought of going to a dietician by any chance? There's one at my endo's office that I meet pretty regularly and she's helped me out so much! I thought I was eating a pretty healthy diet but turns out I was still digesting too much starch/or sugar at any given time. She's helped me to map out my days meals and I have to say I can feel the difference. My acne has gotten better (not gone all the way tho) and putting me on natural dietary supplements.

From what she's told me these supplements that I'm taking are precisely given to me b/c of my problems I'm facing. Maybe you could find someone like that to give you the attention you need? And the great thing is, these supplements are not meant to be taken for life but rather to help your body go back to it's original state and by diet/exercise you can maintain it for life.

I'd hate to see you have to do anything extreme without ruling out all other options. Hope this helped you out a little. =)

[Cutiepatutie]

Thank you for taking the time to read my LONGGGGG post. I truly appreciate your words! I haven't been to a dietian but I have done TONS and I mean tons of research about food and it's connections to not only PCOS but all illness.

Four years ago, I completely changed my diet to only Natural and Organic foods. I consume NOTHING white. I don't do ANY sugar except fruit. There are a lot of myths about fruit. I stay away from dairy except for Kefir and sometimes a little bit of cheese, but very little. I don't eat read meat, it doesn't agree with me.I have cut out wheat/gluten but I love me some fish and seafood, of anykind!! I have eaten free range chicken since I switched the diet but I have noticed, when I cut the chicken out, my symptoms do back off some so now I stay clear of that too, have it maybe once every week or two. My acupunturist told me that chicken naturally has a lot of hormones, you can tell just by the way they "move", that makes sense ......

The diet has done me VERY well, I mentally feel a lot better and physically I do feel better with aches and pains and stamina but the PCOS symptoms have showed off and on improvement. The estrogen dominance scares me to death, my grandmother died of breast cancer so you can see why I am so worried about what's going on. I feel trapped in this body of hormone hell.

Back to the diet, I read Kevin Trudeau's book "Natural Cures They Don't Want you to Know About" and I think that book changed my life forever. I am not as drastic as Kevin because I can't afford to be but I do what I can with the information and I run with it!!! I eat ZERO fast food. I cook almost every meal and I don't use a microwave. I have about 5 restuarants I trust and that's where we eat.

What supplements are you taking??? I have mostly given up on Supps because my body will improve the first month or so and then, WALLA, back come the symptoms like I wasn't taking anything??? It happens everytime!!! The best one I have tried so far was EstroSense by Natural Factors. That worked for about 2 months and I was SO excited about it. Then, PCOS fought back and I had spent a bunch of money and have like 4 bottles here I can't use!!!

[ABK]

Well I'm glad that you're already taking the initiative to control what goes into your body. That's a big step and it seems as if you've already learned a lot about what your body can /can't take. That's great.

From my understanding not only do foods have a glycemic index (how much sugar a certain food has) but also a glycemic load (how much fiber the food has). so even though a fruit by itself may be high on the glycemic index just by eating the skin such as apples, peaches, sweet potatoes etc may help to release the sugar contents of it into your body slower b/c of the glycemic load. And I should mention I always eat my fruits with either nuts/seeds or protein to help build up the glycemic load even more. And you'd be surprised that many fruits and certain vegetables actually have a pretty good load of carbs! I know I was surprised.

The supplements I take are from Standard Process. My dietician and a few other girls I've talked to in the office all rave about it. Like I said, the ones I take are tailored for me. Turns out my liver function was going a little haywire and although I don't have high blood pressure yet, who knows. I was eating a lot of bacon before but have completely cut that out and with the help of one specific supplement it was able to flush everything out from my liver giving me the chance to almost start over fresh. And I'm also taking a few others to help me jump start the communication in the ovaries and brain to produce the right amount of hormones. Sorry I can't give you any further details b/c that's how my dietician explained it to me. Hahaha I always need it in laymens term. But the great thing I know about these supplement are that they help in whatever hormonal problems you have. Considering you have too high of estrogen I'm sure there's something there to help you to balance it out.

I should warn you that these supplements are not the cheapest and b/c I actually have LOW estrogen, one of the supplements I'm taking to help that I have to almost double it everyday! But I have found a couple good websites where I can order them online for a lot less but still communicate with my dietician to make sure I'm taking them correctly.

I absolutely adore my dietician. She's helped me out so much more than a doctor has. Probably due to the fact that I'm able to sit down and talk with her for over an hour each and every time, and not to mention the emails we send each other. She'll often send me little links of recipes to try that are wonderful and low carb.

I hope this helps you out a bit and I'll definitely let you know more about the supplements the longer I'm on them. I've only been on the liver one for almost two months with just a 1.5 weeks to go. And on the new hormonal supplement plan for two weeks now. =)

[Cutiepatutie]

Oh yes, I forgot to mention, I started getting cystic acne again last year and I read a lot about the liver and acne. Then the topic of coffee enema started to surface along with the liver flush with Epsom salts, lemon juice and olive oil. I just couldn't stomach the concoction so I thought more about the enemas. It took me a few months and I finally got brave and started them. Wow, what an improvement in the Cystic acne. I couldn't believe it. I have been better with the acne since the start of the enemas and I overall felt better but the hormones just seem to fight back even more. My cycles have gotten shorter, my periods heavier and my hair shedding at an even more alarming rate. I can't make heads or tales of it all but I do know I have felt better after the coffee enemas then before. The acne reduced right away but everything else just seemed to be the same. I have slacked off on the enemas since I dont want to fatigue my adrenals too much and the acne has flared up again. It's not totally out of control but it is becoming more and more fierce......

Now I have been thinking about my sex life and my acne????? During pregnancy, I was VERY sexually active and had the sex drive of a porn star LOL, hence ZERO acne?? Also as a teen, A LOT of sex, very little acne???? Broke up with my boyfriend (now husband) for a year and no sex and TONS of acne, when I was about 20. Then got back with him, Acne subsided for the most part. Moved from California to the midwest and lived with my sister, Cysts started, very very little sex while living with her??????? I am starting to think there is a connection.....? Any of you girls experience changes in your symptoms with the amount of sex or even just orgasms you have????? Please do share!!!

[ninashope]

Have you tried going on birth control pills to regulate the hormones? They supposedly mimic pregnancy (hormonally speaking), so it might be worth a try.

[Cutiepatutie]

Yep, been there, done that. It was the worst time in my life. I tried different kinds anywhere from the more Estrogen dominant ones to the more Progestin type. None of them did anything but exacerbate my symptoms and completely kill my sex drive which I have lost a lot of already. And then you get off of them and your PCOS is out of control even worst then before you took them. Well I know mine is........But thanks for your suggestion.