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 :
- Ortho Tri-Cyclen Lo
- Loestrin Fe
- Loestrin 24
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.