Endometriosis and PCOS

This blog post will be a lot different than most things that I have blogged about over the last few Months. I feel that not many women understand these conditions in its entirety. Even if only one woman reads this and can relate or is educated because of this post I will feel like my job was done. I am in no way writing this because I want pity or because I am seeking attention. I have never been a “Spotlight” type woman in the least. So sit tight and I apologize in advance for the length of this post but I am speaking of personal experience and knowledge that I have been educating myself on through information of Doctors and Articles I have done my research on.

I hope that no one sees this as taboo to speak about or that maybe it is a bit TMI. I find that because this isn’t a topic that is Advertised on Television, Radio, or Even in some Doctors offices that many women will neglect to see the signs or be tested for something like this because of the lack of knowledge. I am in no way shape or form a Medical Doctor and am only speaking of my symptoms and experiences for myself. Please do not go running to your OBGYN or Doctor saying I have this condition or self diagnosing yourself based on this post. Please seek medical attention if you feel that you may be experiencing the same type of symptoms or issues and let a medical professional diagnose you.

So here is my Story:

In February of 2008 I was diagnosed with Endometriosis and PCOS ( Polycystic Ovarian Syndrome). No before I go any further a brief history. I had always had irregular menses since the 1st time I got my period at the age of 11. They were always extremely heavy for months on end or completely MIA for months. Back then I had seen my 1st OBGYN and was told to just take an iron supplement and that as I got older it would regulate on its own. I have never had a true ” Mother” figure in my life at that time and  my father only did the best he could with the knowledge the Dr gave him . He of course didn’t know what or why this was happening but naturally as anyone would assume if the Dr said this thank that’s it and move on.  I went on about life and as I got older this did not get any better. Without being so graphic I would actually have ” accidents in school ” because I would just simply sit or move to do something and I would bleed uncontrollably. There were times that i couldn’t even go to school because my period was so heavy that the minute I got out of bed I had a trail to the bathroom.

After a certain age I was put on Birth Control. I want to say around the age of 18 or so. This somewhat helped my situation and I noticed that they had started to normalize. I had to be on medication most of the time to control it because otherwise we knew what could happen. Over time I had always and even to this day need to be on iron Supplements because i am always Anemic due to the loss of blood. In my Early 20’s I had noticed that I wasn’t getting my period at all. I actually went almost 8 months of no period. No cramping, spotting nada. I was also in the frame of mind that because I had no symptoms I thought nothing was wrong. I also did not have any health insurance for a while and neglected my health because I didn’t have insurance .  Some places I worked offered it but at the time I couldn’t afford to pay into it.Maybe I could have been checked sooner but it was survival at that point for me and didn’t want to think of any medical issues getting in my way of working. Then one day it came out of left field while at work and I was toppled over in fetal position from the excruciating pain in my lower abdomen and the clots that were coming out of me.

I went to see an OBGYN and was put on Birthcontrol once again. Now this method had worked for me in my earlier years so I thought ok maybe this would work. No one could explain why I was having this pain, Ultrasounds were clear and some even thought it was in my head and that I was over stressed and that is what was causing my discomfort.

At this point I was 25. I had gone to see over 5 OBGYN and everyone gave me the same solution. If I was bleeding too much heres a pill to stop it and heres some birth control to regulate you.

Different Birth Controls I have been on :
  1. OrthoTri-Cyclen
  2. Ortho Tri-Cyclen Lo
  3. Yaz
  4. Yasmin
  5. Loestrin Fe
  6. Loestrin 24
  7. Levora
  8. Beyaz
I can tell you that each and everyone of them created major issues for me. If there was a side effect on there I can assure you that I had most of them . I had extreme weight gain with most, mood swings, depression, headaches, blurred vision, at one scary point with one even suicidal thoughts. 
Out of all of them Loestrin 24 was by far the Best BC I had ever been on . No Side effects whats over!
Ok so now I had been to about 5 OBGYN. I finally went to one that I was recommended to see because at this point I was sick of popping pills and dealing wit this pain. This became harder for me to deal with when my husband and I first got together. It was hard and at times embarrassing to explain what I was going through. To explain why I was screaming in fetal position on the floor or why I was always in the bathroom, constantly changing the bed sheet, sleeping with a towel. Intimacy was also a major issue. It was extremely painful . There is only so much you can tell your partner but he will eventually feel like he is to blame for my moodiness and irritability. I was fortunately blessed to have such a wonderful husband that was there for me every step of the way. Wether it was a warm towel for my belly or a run to the pharmacy 5 times to but pads and tampons. Whatever I needed he never skipped a beat. He was and still is my Rock. 
I went to see this doctor of which was also a Reproductive Endocrinologist. I had explained all the meds I had been on and the pain I was having. In the office they did and ultrasound. Within 5 mins of my visit I saw on the screen what looked to be like polka dotted circles.
Polycystic Ovary Syndrome (PCOS) is a condition in which a woman’s hormones are out of balance.   It can cause problems with your periods and make it difficult to get pregnant.  PCOS may affect the way you look and can be associated with a variety of health problems including diabetes, hyperlipidemia and hypertension.

She explained to me that I had Polycystic Ovaries. You can read more about it here PCOS. I could not understand how 5 other doctors did the same test and saw nothing. They made me feel as if I was just emotional or a hypochondriac at times. She also was able to somewhat see that I had Endometriosis which was what was causing my pain. 
Endometriosis is one of the most common gynecological disorders, affecting 5.5 million women in North America alone. Endometriosis occurs when the endometrial tissue that grows inside the uterus, grows outside the uterus—on the ovaries, fallopian tubes and other areas in the pelvis. The breakdown and bleeding of this tissue each month can cause scar tissue called lesions. Although there is no cure for endometriosis, there are several treatment options, such as surgery, medications and hormone therapy. Talk to your doctor about which options are available to you.

Somewhat resembles Fat,  Yellow Areas
A more Advanced Case.
At this point I was relieved to know that I had been given an answer to my years of problems. However I had just begun my journey of complications. I was scheduled to have a Laparoscopy immediately the following week. 
The purpose of this was to remove as many cyts from my ovaries and burn away the endometriosis.
I went into surgery and woke up with expected discomfort after anesthesia. I have a small scar in my belly button . I also developed significant scarring and stretch marks because the abdomen being inflated with Carbon Dioxide to expand so they can view everything. In my particular case my Endometriosis had already spread to my other organs. If Endometriosis is caught early enough it has less chances of spreading into your other organs. Mine had been tangled with my intestins and kidneys. There was only so much she could remove without damaging these organs. It also explained my stomach issues as well. 
In order to treat the rest of the Endo she could not remove I was put n a Steroid therapy called Lupron Depot. I was on the 11.25 mg injection for 3 month intervals. Now the idea of this was that this would help with any pain of the endometriosis, get rid of what was left . Now also this medication ideally was used to put my body in a menopausal state. By doing this the endometriosis was controlled because I did no have a period. By not having a period, no Endo, no pain . Catch my drift? Now I had to make a hard decision. My doctor had explained that I would have a hard time conceiving because of all of these issues. With PCOS you may not ovulate and your insulin levels aren’t controlled. I had to decide if at the time I was going to proceed with trying to get pregnant or do the Lupron. So it was either have a baby or be Menopausal for 6 months. I was not happy. We decided at the time we weren’t ready to have children just yet and opted for the Lupron. With the course of Lupron it also covered me for a bout a year. I was able to keep my symptoms and Endometriosis for a year or longer. Now the reason she asked if I wanted to have a baby was because during pregnancy your Endometriosis is not a disturbance or even present at times. Also the 1st year of Nusing keeps it at bay as well. I was told I would have some serious side effects with the Lupron . I would experience menopausal symptoms that ranged from mood swings, to night sweats, and hot Flashes. So not something you want to hear at 25. What? Menopause Im 25. Mentally it took a lot for me to handle. A lot for my husband to handle. I would go from extreme rage to extreme sadness in the blink of an eye. Nothing he did was right. Nothing I did felt right. I gained 35 lbs over 6 months. I had Insomnia and migraines. 
Lupron definitely put our relationship to the test. The Dr assured me that it was normal my symptoms and gave me hormone patches (Vivelle Dot) to help with the symptoms a bit. After a few months of the patch I developed cramping and pain. The estrogen from the patch was stimulating the cysts on my ovaries. 
It took over a year and a half for the Lupron to leave my system. I have been Endometriosis free for about 2 years now. I got married last September and we decided that we wanted to start a family soon after. Unfortunately this was not going to be easy since I was always so irregular and the only way I got my period was with medication called Provera or Prometrium. 
So here is my update:
I started taking Clomid which is suppose to help me ovulate since I dont on my own. I still have to take Prover and Clomid. I have been on Clomid now 5 times. Clomid also comes with its long term effects. It triggered my PCOS to return so I now have cysts all over my ovaries again.  This can also affect your vision and in long term use may cause cervical cancer. 
Long story short we havent been successful at conceiving. I have had an IUI(Intro Uterine Insemination) that failed. I began seeing a different specialist because there was nothing else my current Dr could do for me. 
She recommended I have something called an HSG:
In a nut shell a dye is injected to see if the fallopian tubes are blocked. 
Was a fairly quick procedure and experience some pain after but I was fine. 
I received the results of my HSG yesterday.
I was told that I had a Heart Shaped Uterus. My tubes were not Blocked but there is a dent in my Uterus.
What mine looks like not my pic of course but an idea:
What it should look like:
I was told that in this case this is what could happen. When there is a dent or the septum it can prevent a baby from properly growing . I am more at risk for miscarriages or delivering prematurely because there isn’t enough space for a baby to grow. I need to have a 3-D Ultrasound to see if my Uterus in fact has a deep dent down the middle. If so I will need corrective surgery for this asap. If not I can still conceive but I am more at risk to have complications. I am currently taking Metformin aka Glucophage to help with my PCOS. This is normally a Diabetic medication but recent research has found that it helps with the insulin resistance portion of PCOS. It isn’t the most pleasant medication to take for it really does number on my stomach 90% of the time. 
As of right now I am scheduled for my Ultrasound next week. I hope this was informative to you all. I know so many women that have irregularities and don’t know what questions to ask or aren’t educated enough. 
Some Sites to Help and Keep me Informed :
This article is the most Amazingly true thing I have ever read wish I could have it in a card or something would be great:
Please feel free to ask any questions. I will answer in any way I can . Feel free to share your experiences  also. I stay positive and do not let this run my life there is hope . Although there is no cure I can supress the symptoms. 

Comments 21

  1. Ms. Prettyful Girl

    Wow, Cathy, I had no idea. I’m so glad that you shared this with us. I am sure that there is at least 1 woman out there who you have helped out by doing this. It is a very sad and difficult post to read. My heart goes out to you and your husband. I am happy to know that you have a wonderful man by your side helping you through this. I, thank God, do not suffer from this. But you did help me out by sharing your experiences. I have 2 daughters of my own and I swear to you that I will never, ever take them for granted ever again. I wish you and your husband nothing but the best and will always have you both in my heart and in my prayers. Continue to be strong and always know that you have friends here to help you. Much love to you. XXOO

  2. toshiam

    Thank you for sharing your story. Many women do not know about PCOS, or they assume information that is untrue. We should all share our stories to make women aware of PCOS and Endometriosis. These are too “disorders” that affect our lives mentally and physically. I have had two miscarriages since my diagnosis. They are completely heartbreaking. Have you tried Metformin? It’s not like Clomid but some women have luck with it instead of Clomid.

  3. Anonymous

    Wow, u really r a brave woman for dealing with all of this and sharing your story..I wish u and Chris nothing but the best in hopes of conceiving..Loves yous both !

  4. Anonymous

    Wow, u really r a brave woman for dealing with all of this and sharing your story..I wish u and Chris nothing but the best in hopes of conceiving..Loves yous both !

  5. Cathy

    @toshiam. I am taking the extended release metformin amd hate it bc of stomach issues. I am glad peolple are gaining info on the situation

    @ Lisa I am a private person for the most part and was always hesitant to share my story didnt want to gross anyone out or idk didnt want it to seem like I needed pity. We are staying positive that there will be no more issues for us.

  6. Amber

    Wow, I am glad you shared your story. I had no idea you were going through this, what a tough woman you are. Its so great your husband is there for you every step of the way! I have never had a problem with irregular periods or major cramps, but I have many girlfriends who do. I think this post will be very helpful to many girls! I wish you and your husband the best in trying to conceive and always remember to never give up <3

  7. Cathy

    Hey Amber Thank you for taking the time to read this really long non beauty related post. I am glad more people understand. I cant tell you how many people including family never truly understood my condition or new what struggles it came with.I cant tell you how many responses I have gotten even from close friends that never really knew. I am glad I could be of help . I thank you for your kind words and thoughts. Its all about Positivity for Us and you all have helped me stay positive today!

  8. HeKeLa

    Wow..you have endured so much, I commend you for your courage and strength through ur journey! You are truly a strong woman, best of luck to you. My fingers are crossed that you and your husband will soon conceive. HUGGS!!

  9. Tammy

    Thank you for sharing your story. There are several women in my family who have this too and I know their journey has also been a struggle. I will pray for you and your hubby to have the life you dream of. <3

  10. Cathy

    @ Hekela thank you for the encouragement hoping that everything will be resolves soon.

    @ Tammy thanks, there are so many people that either never heard of it or Dr’s dont even touch on it which is why my case was so advanced for years no one saw the symptoms. I hope your family feels better and I appreciate the prayers

  11. Jessica Imperial.

    OMG! I can’t believe that it took that long for a doctor to accurately diagnose exactly what the problem was. I think that’s really brave of you to write about it as well and that there’s probably a lot of other women who will be thankful that you did. Stay strong girl and I’m sure all your readers/subscribers including myself are rooting for you and your husband to conceive. Take Care.

  12. Chelly

    HI Cathy, OMG reading your blog about Endometriosis totally makes me feel like I’m reading my own life story over again, I was diagnosed in 2002 but like you said my periods were always so heavy and painful I could not go to school, I would vomit from the pain and intercourse was just miserable, I am actually undergoing surgery 2 moro for the endometriosis, I get surgery every year to burn off the tissue and remove the cysts I have also gotten a hysterectomy and removed one ovary because of the endometriosis getting so bad, I feel you girl- if u ever need to talk or chat whether it be about makeup or women things send me a hello- I’m only one blog away LOL ttyl girl, I hope u are doing well 🙂

  13. Cathy

    Hi Chelly Every year? You have the procedure done thats crazy. I wish you the best of luck today and a speedy recovery. I love your blog btw and you have 6 Children? AMazing woman that you are. You were at least blessed to have those little miracles in your life. I am glad I have people that can relate to my situation I sometimes feel alone and like no one understands the pain but. I look forward to chatting with you more also on whatever you wanaa chat about. YOu have a friend here anytime! xoxoxoxo!

  14. Jess

    Thank you for posting this! I was diagnosed with endometriosis 2 years ago and it had eaten into my left ovary and attached to my intestines. I lost most of that ovary and found out that to get pregnant we would have to go through ivf. I was very fortunate though and we have a set of beautiful twin boys from out first ivf cycle. But things still weren’t right, I am still irregular on my birth control. I was diagnosed with PCOS today and found your blog to see if anyone else suffered from both. Know that we were able to have babies, conceiving is difficult but you can carry a pregnancy! Thanks for posting this!

  15. Anonymous

    hi, i am in the same situation i have been ttc for 20months. i had a diagnostic lap & dye yestaday and they found endometriosis behind my right ovary, and my ovary was stuck to it… I had the lap & dye as i have pcos and had clomid for 7months but have still not got pregnant… i am now goin to try two more months of clomid as my tubes were clear and fingers crossed it works…thought i mite be the only person to have pcos and endometriosis. Anyone also have this treatment and got pregnant?? : ) many thanks emma

  16. Anonymous

    Thank you for sharing your story. It sounds very similar to mine. I have PCOS & Endometriosis. My husband and I ttc for years unsuccessfully (had used clomid, HCG). We adopted children & were considering ttc again now that I’ve been on Metformin for a while. Within the first month of ttc, my endometriosis began to act up. Yesterday I was down the entire day screaming out in pain. I had taken 5 ibuprofen & used the heating pad and I could barely walk to the bathroom. I have a Dr. appt. today to talk with my OBGYN. I’m praying they can help me. I’m 28 years old & could never conceive. My mother had endometriosis, too and had a complete hysterectomy in her early 20’s after having my brother and I. I asked my Dr. if I could get one and they don’t want to until I’m 30. I would like to conceive but after trying for 7 years and having so much pain, I just want the Dr. to take my parts away if they can’t fix them. I’ll be interested to hear what’s next for us… just tired of the $ spent on this & so much pain… Thanks for sharing. It really makes me feel less alone in all of this.

  17. Cathy

    @Anonymous I cant thank you enough for sharing such a heartfelt story. I am so sorry you and your family.I had my Endo Surgery back on 09 and I have been having some pain again and haven’t had a period in months now. I am so frustrated and cant understand why I just get different answers from different doctors. You are definitely not alone in all of this .Just be thankful that you have been able to still have a family.My headaches have increased and cramping has also. I will be 28 in Decemeber and am trying to find the strength for my husband and I not to be discouraged. I need to make an appointment myself but afraid of what they may say.My Battle with PCOS is overwhelming as well. I cant seem to budge any weight and always feel super exhausted. Im here if you ever wanna chat further hang in there love .Your family and friends are there to support you keep me posted!

  18. EndoJourney

    Our stories are so similar I thought I was reading my words while reading this! I had horribly long, heavy periods too. Was also told that I was just young and I would outgrow it. The pain of the periods got worse and worse over time. Yasmin helped me tremendously but only for a couple of years and then it started getting worse. Long story short I was on Yasmin for 12 years and then finally had a lap that revealed stage 2 endo. The doctor couldn’t get everything out but did the best he could. Tried Lupron for 2 months but had to stop because endo pain was getting worse. Tried Femara + Norethindrone and the side effects were better but still absolutely no improvement of endo pain. Finally gave up and went back on Yasmin for a few months. In the meanwhile, RE discovered that I have PCOS too even though I’m not overweight. My IUI is scheduled for tomorrow but I’m nervous about how fertility treatments are going to work for me since I have both endo & PCOS. Thank you so much for sharing your story. I feel far less alone!

  19. Cathy

    Hi thank you so much for stopping by and How did your procedure go? I am still on the fertility treatment phase myself. I have done 5 rounds of Clomid with no success so were are getting a little more aggressive with medication which I am not thrilled about. I unfortunately have a major battle with my weight and it is so frustrating to diet and exercise and see almost no results with PCOS.I am sending some Baby dust your way! Do you have children already? Please keep me updated would love to know how you are doing 🙂

  20. Michelle

    You just basically told my story. I have been having issues since my first period at 13, but it got worse after my son was born 10 yrs ago. I was diagnosed with PCOS at 17 and diagnosed with Endometriosis after laproscopy/endoscopy in 2003. I also have a bi-coranate uterus which means my uterus has a large septum that separates the two, plus a spit cervix. After laproscopy, the doc said I had black endometriosis over all my internal organs. This is horrible. I have had Lupron which the benefits only lasted 3 months pain free, also 4 lap/endoscpies, with no releif. I have had 5 miscarriages and one eptopic pregnancy which resulted in emergency surgery and the loss of my right fallopian tube. We are holding off on a hysterectomy because I want one more child, but every month the endometriosis gets worse and I have rupturing very painful cysts every other month.I deal with nausea because the endo is around my stomach also, insomnia, energy loss, spotting all month and now cramping all month long, not to mention the excrutiating pain around my period. I am just so glad that someone else knows what I’m going through. Made me cry, sorry, guess I’m a little emotional foggy now, but this is a rough subject for me. Thanks for sharing, I’m right there with you. I’ll be praying for you and for a successful pregnancy!

  21. ☮atka☮jafar☮

    thank you very much
    i find this article very helpful and im inspired to not feel so much in a depression anymore because i thought i would be the only one who knows what’s wrong with my body because none of my family has this problem.
    i have pcos too and im praying for you 🙂

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