March is National Endometriosis Awareness month.
What is Endometriosis??
Endometriosis is a painful condition where the tissue that is normally lining the inside of the uterus (the endometrium) is found growing outside of the uterus. The ovaries Fallopian tubes, and tissues lining your pelvis are commonly involved.
Who and How Many Are Affected?
Research shows that Endometriosis impacts 1 in 10 women who are of reproductive age. It is estimated that endometriosis will cause infertility in 30-40% of those who have the condition. It is believed that 7.5 million American women are affected by this condition. And 176 million women worldwide. Not only do those with Endometriosis have problems with fertility, they also deal with life altering pain that can have an impact on all areas of their lives. Not just their intimate relationship with their partner.
What are the signs and symptoms of Endometriosis?!?!
-Painful Periods- Pelvic pain and cramping along with the possibility of low back and abdominal pain. The pain may begin before your period and extend several days into the period.
-Pain with intercourses
-Pain with bowel movements and urination – most likely experienced during your period
-Excessive bleeding during period
-Infertility
-Other symptoms someone with endo might experience: fatigue, bloating, nausea, diarrhea and constipation.
My Story
Now that I have talked about what Endometriosis is, how many women are affected and the signs and symptoms to watch for. I want to share a little of my Endometriosis story. As far back as I can remember I was always plagued by severe menstraul cramps. I’m not talking the kind of cramps where you can just take a couple Advil and go on. I’m talking about menstrual cramps that left me stuck in bed with a heating pad on my belly and one of those heat patches (see picture below) on my low back. I always bled really heavy and had pain at all points of my cycle, through most of the month when the Endometriosis is at its worst. I also had issues with passing clots during my period for several years. However, I was led to believe that those issues were due to the specific birth control I was on.
I have tried multiple forms of birth control over the years, from
the shot, to the ring, and the patch. As well as many different pills but none of them were really able to regulate my cycle, and make it a “normal” 28 or 30 day cycle. It wasn’t until like 5 years ago when I finally decided my symptoms weren’t normal and I needed to find answers. The first time I went in my doctor felt that i just had bad periods and we needed to try a different oral birth control. However, things couldn’t be okay with the severe pain and bleeding issues I was experiencing. Also an adult women in her twenties should not have cycles that ranged from 10 days to 4 months apart, & everything in between, even while being on birth control. Before that I just assumed I was one of those women who would have painful periods. And that would take. awhile to regulate my cycle. Boy was I wrong.
Finally in 2011, after multiple scans, ultrasounds and dr visits, I made another appountment with my OBGYN. All the scans and testing had never showed that my appendix needed yo be removed, deapite the most intense pain I felt was right in the area of my appendix. At that appt she gave me a couple different options for treatment.
I had THREE OPTIONS
1. Start Depo Provera Shot– I declined this because I gaines 40 pounds the first time I took it. And honestly I just couldn’t deal with more wt gain at that point.
2. I could recieve the Depo Lupron Shot, which essentially throws you into early menopause. It is effective because you would no longer ovulate, which should decrease the pain. I also denied this option because I was only 26 and not ready to be thrown into menopause.
3. My last option was to have a Laparoscopic Surgery which is the only true way to diagnose Endo. It is also a treatment because as they go in and look they also get rid (burn off) of any of the endometrium that was in places it should not be. This is what I chose. I wanted to know we were treating what we thought we were.
If you aren’t knowledgeable on Endometriosis, the only true way to diagnose it is to have a laparoscopic procedure where they put air in your belly and inflate inflate it so they can see everything with a very small camera. I had my first surgery in November of 2011, when she got in there she saw that I did have significant amount of Endometriosis. Which required her to ablate those sites (aka burn off) those spots, and clean out everything she could, in hopes of getting rid of my pain. This is also the procedure that is done for ladies with endometriosis who are having a hard time conceiving, in hopes that it will help them get pregnant and carry a baby to term!
Finally after having my first laparoscopy in 2011 I received the diagnosis of Endometriosis. And was told at that point that it would most likely going to be hard to get pregnant. Over the following year we found out that getting pregnant and carrying a baby was just not going to be much of a risk for me between the Endometriosis and Lupus. It would put me and the baby at much to high of a risk!! This is probably the worst news I’ve ever gotten. Over the last several years I have spent a lot of time crying over not being able to naturally have my own babies. Being a mom has been a goal of mine for as long as I can remember. I never wanted anything more. But I have since come to terms with this issue, and hope to adopt one day. I have always felt a calling to adopt. There are so many babies and kids who are in foster care that need a good mama and aren’t getting adopted. So adoption will most likely be the way I have kids. Even though it’s not how I’ve always planned. Do I still have down days about the fact that I will never carry or deliver my own baby? Yes, and I feel that it is just normal to have sad days and negative feelings as you go through life with multiple chronic illnesses. When your ultimate life plan changes you have to adjust. You can’t just stay on that same path.
For other women who don’t have all the health problems that I do and are able to carry a baby, if they could get pregnant, there are all other options. So, please don’t ever let anyone tell you that just because you have Endo that you can’t have children. Because thats just not the case anymore. There are options like doing fertility treatments like IUI or IVF, or even a surrogate.
Endometriosis is not a condition I would wish on anyone. Not even my worst enemy. I have currently had three endometrial ablations done. I am able to get 18-30 months of little to no pain as long as I stay on Continuous Birth Control to prevent me from Ovulating every month. I will most likely be having surgery this year or next, because it will be two years since my last one in December.
My biggest recommendation for someone who has been newly diagnosed, or to someone who has had the condition for years, is to find a support group or a friend who has the same or similar condition. It doesn’t have to be the typical group, like the one that pops in everyone’s head. It can be one person who understands, maybe a friend or family member who struggles. Or a group on Facebook who deals with PCOS or Endometriosis. This condition is just like any other. You can’t run and hide. You will have times when you need support that in most cases your friends, family and spouse can’t give. Not because they don’t want to, but simply because they haven’t walked that road. The best things we can do for ourself and for others in our place is to find someone who understands the daily struggles, that we can talk to without worrying what they think!! The other thing I always push for with any disease process is to educate yourself. You can’t tell others what’s going on or decide what treatment is best for you if you don’t understand the condition.
Please feel free to share this with anyone you think could use the Information and support.
If you have the time check out the blue hyperlinks throughout the post. They are websites that have good correct information!!
With Love,
Amber
Thank you for sharing this information about endometriosis and for sharing your story, Amber. I, too, have endo. For me, it was one of the reasons that my hubby and I were not able to conceive and are now childless not by choice.
I wanted to comment on one point you made–“So, please don’t ever let anyone tell you that just because you have Endo that you can’t have children. Because thats just not the case anymore. There are options like doing fertility treatments like IUI or IVF, or even a surrogate.”
While this is true (a friend of mine has endo and was able to carry a healthy baby to term), endometriosis does complicate things. Personally, I did seven rounds of IUI, none of which resulted in pregnancy. Through my research (done recently–many years after the fertility doctors recommended IUI to me), IUI is not recommended for those with endometriosis, as it is rarely successful. Also, please keep in mind that IVF, surrogates, and adoption are all very costly, with their own set of unique struggles.
I do not say this to dishearten anyone. Like you, I believe it is good to have the facts in order to make the best decisions you can for your health and building your family.
I hope your adoption road leads you to the little that your heart desires. My hubby and I explored that path as well. Ultimately, we were meant to be an aunt and uncle, pet parents, and host parents to an amazing foreign exchange daughter. 🙂
Thank you!!! It’s more the lupus than the Endo that will cause me not to be able to have a baby. None of the lupus meds are safe while pregnant and therefor I would have to come off all my meds which would be a disaster. I see now that I didn’t word that completely right. I’m so sorry for your journey but am happy that you’ve reached a point that you are happy!
Thank you, Amber! It took awhile, but I have finally accepted my childless life and can see the bright sides. 🙂
Personally, I think it’s very brave when someone decides not to pursue pregnancy because they realize their body is not healthy enough to carry; therefore, they choose a different path such as adoption. It is truly inspiring… Very selfless!
I hope one day I can truly be okay without having my own babies. I am now but who knows how I will feel 10 years down the road.
I also don’t think even if i was able I would have kids honestly. Bc I fear that I would pass on all the autoimmune issues I have. And I couldn’t bear the thought of my child suffering like I have.
I’m 58 yrs old now. I also suffered from the get go with horrible cramps. I’d lay in front of the commode on the cool tile floor and just cry. It was bad enough the first day and the 2nd day was worse. I also have FMS, depression and a host of other things stemming even from childhood. I knew I could not go through pregnancy even at 18 yrs old (when I got married). My husband had a hard time relating as his mother and sisters didn’t have those problems and he thought I was just weak, hypochondriac. But we’ve been married over 40 yrs now and he’s much more understanding. As soon as someone would listen to me (in my mid to late 20’s) they did all the tests they could and I tried all they suggested. But every month I went through that pain. When I was 28 and had been married 10 yrs, they went ahead and did a complete hysterectomy. Although the pain was gone, I have suffered with hormone imbalances ever since. Nothing has worked. Premarin, pills, shots, patches, creams, vitamin supplements, nothing worked. So for 30 yrs I’ve been basically in menopause with round the clock hot flashes and night sweats. I have finally found a natural supplement (and, believe me, I’ve tried everything anyone ever suggested!) that has cut the hot flashes down significantly and I won’t be without it now. You can get it on Amazon (Dr. Tobias Menopause Supplement for Menopausal Support & Hot Flash Relief – Natural Help for PMS, Adrenal & Hormone Balance, Women’s Health & Well-being). I don’t make money from this, just passing along something that has helped me tremendously after many years of suffering. Knowing from a young age, that my body couldn’t go through pregnancy and knowing I didn’t want to pass down my physical problems, helped me deal with not having children. But my sisters were the best! They had children and they generously shared those children with us so that our niece and nephews are like our own. I’m not advocating sloughing off your responsibility on someone else and they never did that. But allowing us to be a part of their lives, letting us babysit, take them shopping, help them with homework, pick them up from school, take pictures at the high school graduation, etc. was balm to my soul! It gave them a break and gave us time to have relationships with the children. They are now married with children of their own and they share them with us like grandchildren. So it’s like the children have multiple grandparents. We helped one move to her dorm at college, helped her then move to an apartment, taught one to drive, gave one the money to buy his wife her engagement ring and let him work it off in yard work, etc. If you do have children and you have someone in your family who didn’t get that joy, then don’t be afraid to take up their offer to babysit or pick up the kids, etc. You could be making their day. We were grateful for our sisters and their husbands letting us have a part in the kids lives and we took it seriously and tried to be responsible and not take advantage. We also hope they see it as an advantage now as we’ve tried to be helpful in any way throughout the lives of their children and now grandchildren. Sort of as junior parents. Children can’t get enough love and attention so I’m sure it helped them grow into the responsible adults they are today. I’m not a fan of Hillary but she said one thing that I believe in: “It takes a village”. We were part of that village for our nieces and nephews, especially my sisters’ children.
Thank you so much for sharing your journey. It means a lot. I feel better about not being able to have kids bc my sister is 18 and I was 14 when she was born so I have really gotten to help raise her. So in a sense I feel like I’ve had a baby. She has always called me her second mom. We are super close.