I would really love to hear from anyone who has experienced BOTH endometriosis AND Polycystic Ovarian Syndrome, but if someone has experienced just one, I would like to hear their thoughts too. I have been diagnosed with both and am having a hard time deciding, understanding, which to receive the most aggressive treatment for... I had a uterine laproscopy several years ago to determine the severity of the endometriosis and it was determined to be a "moderate" case according to my obgyn. I was also told I had PCOS based on my blood tests & pelvic/transvaginal ultrasound. I have had the most horrific menstrual pain & all the pmd symptoms & illness associated with hormone imbalance since I first started menstruation. I had irregular periods & when I did menstruate I had extremely heavy bleeding & a pain that made me WANT to die because nothing I did seemed to result in any relief. Anyway I have been taking birth control for probably 15 years on & off and I am currently off. My endocrinologist says it is necessary to treat the PCOS, that I need to have a period at least every 4 mos to reduce the risk of cancer, she prescribed Metformin, & suggested I see my obgyn to discuss birth control because she would recommend it for the PCOS, but said the endometriosis has to be closely monitored by the obgyn & that it often feeds off of the hormones produced by the birth control pills. So my question is: Which should I be most concerned about? The endometriosis or the pcos? Mainly in the event that one could lead to cancer. I am 30 and have no children & with the multiple health issues I have don't plan on it. I would like to hear from women who have one or both of the ailments I mentioned & what their experience is/was, their knowledge about it, and any advice they might like to offer. Thank you!!!
Anyone suffering from one or both Endometriosis AND Polycystic Ovarian Syndrome???
- 9 May 2013 by PurpleButterfies
- 4 November 2018 (5 weeks ago)
- birth control, endometriosis, endometrial cancer, premenstrual dysphoric disorder, ovarian cancer, polycystic ovary syndrome, menstrual disorders
I have both..working against me. I'm on metformin and I had surgery. It still hasn't worked. I've been on Clomid. My doctor decided to stop my cycle for a couple of months. The med has had bad side effects. I'm going to the doctor in the 15th. He said I might just have the big surgery done... I've been doing Everything that I'm suppose to do.I don't feel like its fair... I have 2 step kids... I should be greatful. But I want to have a baby that will have a little peice of me and him togeather... my husband has been standing by me .he even told me if I couldn't. It would be ok to.but sad...
I have endometriosis, PCOS, and fibroids ( biggest measuring at 5cm).
I found about my endo when I was 22yo and used Lupron Depot to treat it. Lupron Depot pretty much puts your body in a menopause state (lots of hot flashes), rids your body of a cycle. Took 18months after my last depot shot for my period to come back on and when it did it was extremely irregular, thats when I was diagnosed with PCOS (high testosterone and cystic ovaries). My next step on this medication roller coaster was metformin 2000mg. I was metformin for a year before my labs were back to normal ranges cycle became regular. My husband and I got pregnant on our first try. I used clear blue digital ovulation test and hit on the first go round LoL . I am currently 11wks today. I was also advised to stay on metformin til for 12 weeks.
I had one scare so far with a subchorinic heritage (bleeding while pregnant), but the ultrasound showed everything was fine.
so yes us women with a crazy uterus can get pregnant ;)
I have had pcos for about 5 years, I was diagnosed only a year ago... I was diagnosed today with endometriosis... I am scared as to what i should be doing... I do have 3 children so it isnt like if they want to do a hysterectomy i would lose that but i have 3 boys and would die to have a daughter... I am really just curios since this post was over a year ago if there is anything you could tell me that may help me along the way with both of these issues!
I'm 26 and have both. I was diagnosed with pcos when i was 14 after my first menstruation. I had an irregular cycle. i was immediately placed on birth control and have been on it inconsistently since. However, I'm a very active person. I am slightly overweight but as long as I exercise and eat healthy, I do have a regular cycle even when im not on birth control. The longest I've gone without it is a year and everything was fine. My diet is low in carbs, high in whole grains, mostly baked and grilled foods. I do exercise 4-5 times a week. Pcos is a black hole and once you let it get a hold of you, it's extremely difficult to get back into a healthy routine. I am not prediabetic nor am I insulin resistant. A healthy lifestyle seems to work for me. However, when I neglect myself (because it does happen) I gain weight very easily, experience intense pms, have very low energy and some other stuff.
In regards to endometriosis, i was diagnosed with it this year. Last april, i was experiencing extreme discomfort during sex. I therefore called it quits for a while and remained abstinent from april til august. I thought my partner was just too rough. But in august, new partner and still extremely painful. I figured i had cysts. So i made the first available appointment that i could and unfortunately for me, i didn't get to see a doctor until January. It was determined that i was cyst free by my endo-gyn and referred to a pain specialist. She diagnosed me with endometriosis and recommended surgery or birth control. I chose birth control as i am not interested in conceiving yet. I had an iud inserted on feb 27, 2015 and feel amazing. No pain at all. I chose the iud because i can try to conceive immediately once removed. I wouldn't want my endometriosis to flare up again. :-/
It was recommended that i take metformin but i do not. Im already active so currently i'm in the process of losing weight so that i can keep my pcos under control without medication.
Nontheless, pcos and endometriosis are different for everyone. You have to find what works for you. Goodluck ladies! It's not easy being a woman.
I was diagnosed with both when I was 16 years old and I am now 19. 2 years ago I had a laparoscopy done and my gyn. Said my endometriosis was severe. I haven't had a period in 3 years now because of how bad my cysts are. I have been on at least 9 different birth controls and last may finally found one that makes it all a little better. Its called amethyst. Though back in December I started getting my cysts again, (a new one about every 2 weeks) this birth control makes my condition the most tolerable. Growing up sports have always been a huge part of my life but I had to miss out of then both my junior and senior year of high school because of both pcos and endometriosis. Between feeling so horrible all the time and being in constant pain every day for 2 straight years and the weight gain from all the different hormones I was putting in my body, it was hard to be involved and live my life like a normal teen.
Between doctors appointments every 3 weeks and being hospitalized constantly because of the severity of both it was rough. My gynecologist is located in Boise Idaho and after my surgery told me she has never seen such severe endometriosis in any of her patients, especially at such a young age. Getting my ovaries removed has been a thought for me for years now and after I turned 17 I was going to do it because I couldn't take the pain anymore, but no doctor would remove them because I was still so young. I think the worst part was that no one in my family when knew what it was until I was diagnosed so it was hard not having anyone the to understand the pain, but I at least have my mom here with Me every step of the way helping me cope, through all the school I missed, doctor appointments and hospital trips. I think one of the scariest parts is not knowing if I will be able to have kids. Growing up in a big family has made me want one of my own someday, yet the question of if that is possible is still out there. My risk of ovarian cancer and endometrial cancer is very high. About 2 summers ago I tried a new medicine called lupron, which is a shot usually given to men to treat symptoms of prostate cancer. It was a 6 month trail with a shot every 4 weeks and honestly it was miserable. Yes it helps the pain so much which is great, but the side effects weren't worth it to me. Between it causing me to go through menopause basically and about a 15 pound weight gain with every shot, it was horrible. Between constant heat flashes, and mood swings like crazy I HATED it. My mood was up and down all day, I would randomly break into tears for no reason, I would be really happy then really mad within seconds, I still wonder to this day how I still have friends after that long 6 months! It also has a high risk of suicidal thoughts, which I thankful never experienced. So yes it was helping the pain for the most part, but being put through hell was not worth it to me. Though I still get cysts constantly my new medicine amethyst is the best so far.
I have moderate to severe endometriosis. All the women on my moms side of the family has it, so of course I have it! It causes unbearable pain during my period, enough to make me pass out or almost throw up. No pain killers dull the pain either, I just have to basically sleep for the first day and a half because I literally can't do anything. They say it makes it harder to conceive, but I happen to be 7 weeks pregnant right now! And I was on birth control! Miracle baby I guess! So even though I'm pregnant, the "normal" cramping other women experience during pregnancy is a little more for me because of it. We had an ultrasound yesterday and baby is safe an healthy, so they are not miscarriage cramps. But yes, not fun. My mother had is very very bad, she eventually got a hysterectomy because she was bleeding so much and in so much pain. But with endo, she still conceived 4 children, no miscarriages.
It's just a pain! And birth control actually helps the pain of endometriosis during your menstrual periods, because the hormones lighten your periods, your uterus doesn't cramp as bad to remove the extra lining. I've been on birth control sice December (not anymore since I'm pregnant), and my periods went from 7 day long and heavy heavy bleeding, to 4 or 5 days long and light to regular bleeding. And there was half as much pain. It works!
At the age of thirteen I was diagnosed with severe endometirosis. My case was so bad that it pretty much destroyed my gallbladder. At the age of 14 I was diagnosed with PCOS. They told me at that age I would probably never be able to have kids mainly due to PCOS. I have been taking birth control since 6th grade to help with the pain and all the problems I was going through. The summer before I started college I decided to give my body a break from birth control. That summer I was in the worst pain I have ever been in. Since I stopped it, cysts were erupting left and right. I eventually had to get back on it. I recommend staying on it, it truly helps. But for endometriosis, if I ever want to try to have kids, I have to have surgery to remove some of the endometiosis. But even with surgery, I was told it will eventually grow back.
About 3 years ago i went 5 months without a period then all of a sudden i was in so much pain and uncontrolable bleeding. I went to the emergency room and they told me it was all in my head and my period was just catching up. I went another 4or 5 months with the pain and bleeding until i passed out from all the blood loss so my mother in law to me to her doctor and as soon as i told him what was going on he knew imedetly that i had pcos the text confirmed this. He said ths heavy bleeding was caused by me hemorraging and said if i would have waited any longer i would have bleed to death. I took birth control pills but they didnt work so now i am on provera and it has helped me have my periods every month. Last year i had laproscopic surgery to confirm endometriosis and sure enough i do.
I go every moth taking my provera and having my periods but i am in so much pain and i have gained so much weight and i feel depressed and fatigued all the time im really having a hard time dealing with all this because noone else in my family has this condition.
Honestly, it's a little more common than some women realize. With that being said it's a chance for women to come together.
At 14 I got the diagnosis of pcos and then just recently when I sought a new obgyn did he give me the diagnosis of endo. (Not to mention the reason I found a new one was because my last one basically made me feel like absolute crap for having herpies, she obviously wasn't w good Dr to begin with)
I'm now 19 and my best advice is be honest with your doctor. Don't be afraid to call their office to explain your pain. (It can save a lot of money opposed to waiting last minute and going to the ER) I found before going to bed touching my toes and doing almost a "downward dog" position to loosen my back helps me sleep. I usually do it again in the morning (if I'm not running late)
Another thing I think should be discussed is sex. I'm going to be honest, it honestly sucks sometimes! Especially when you feel both may be flaring up at the same time! I personally feel communicating with my partner (Fiance) is all I can really do!
Unfortunately I cannot provide any information on surgeries because I have not been able to afford one for either, but I do believe some other wonderful ladies have answered that for you.
Hope this helps and have a blessed day!
I have both endometriosis and PCOS. I have always experienced extreme pelvic pain and cramping, whether on or off of my cycle. Despite 2 laparoscopic d&c's, the cysts continue to return. My new provider talked me into trying a new birth control pill to balance out my hormones. A short while later I learn that I am 7 weeks pregnant, which I never expected to be possible. While many may be excited in this position, I am in extreme pelvic pain. My doctor says the pain is from the fibroids, and while pregnant, there is no treatment besides Tylenol. This pain feels so unnatural. I can not imagine experiencing this the remainder of the pregnancy! In addition to the pain, fear associated with miscarriage is also overwhelming. Hopefully things will get better over time.
i was diagnosed with pcod when i was in my early teens when i turned 18 i was told i couldnt have children i was in a lot of pain dueing sex and when having my period.. went back to gp and they sent me bk to the hospital and i ended up having a laposcopy where they found out i had endometriosis and a blocked right tube i fell pregnant at 24 but sadly loss my baby girl i am 33 years old now and my hormones are all over the place i have been told my prolactin hormone is high now too the amount of time i have had off work cause my stomach flears up that badly i cant move out of bed.. does anyone know of anything other than mefanic acid i can take for it
I realize this was posted some years ago but maybe it'll get to you. Yes I have both and it's been a long... ride so to speak. Have had two surgical procedures operations and what not. I'd recommend you have the nova sure done, it's a burning of the uterine wall which stops the bleeding cycle. It will relieve you of those terrible periods and the pain that comes with it. All the hormones still intact no need for pills. Make sure you've go a good o.b. It sounds like yours is mild compaired. I hope this helps if you've any other questions feel free.
I totally hear you about the pain. I was diagnosed with Stage 4 endometriosis. Was suffering from very heavy bleeding and severe pain throughout the month worsening at my period. Had laparoscopic surgery to remove endometrial lesions and ovarian cysts. I have deep infiltrating endometriosis on the bowel and was told that I may need surgery to remove this. So far, I live most of the month pain free and my 'pain days' are now 5 out of 10 as opposed to 9 out of 10. My doctor advised me to try various different forms of oral hormone therapy... no of which agreed with me. Was also advised to try the marina coil - but I didn't fancy that. I went about looking into it myself for alternatives and tried a combination that has worked for me. I have discussed it with my doctor and it is very important to work with your team on this.
Obviously I don't have any experience with the PCOS, which you need to be treated for but for the endometriosis I starting taking B complex - as I found in the research that many women with endometriosis have low B vitamin status, I also take omega 3 - for it's anti-inflammatory properties (omega 6 increases inflammation), and also take magnesium - for its effect on smooth muscle contraction (relaxes the muscles better), I also do a small amount of yoga (maybe 20-30 mins 2-3 times per week at home)..I did try at one stage, going without the supplements and my pain returned... three and a half years later with continuous use I have minimal pain and my period has gone from 7 days of heavy bleeding down to 2 days of moderate bleeding... None of this was cited in the literature as a 'cure' for endometriosis but it certainly has helped me... wouldn't this be fantastic if it helped others too!!!
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