September 17 will mark 10 years since I was diagnosed with endometriosis. In that time, I have undergone five surgeries and countless hormone treatments (including various birth control pills, Lupron shots, and medications like Femera) in efforts to control the endometriosis and its side effects.
As I just mentioned, almost all of the current treatments available for endometriosis patients involve hormones. The side effects of these medications include nausea, weight gain, hot flashes, vaginal dryness, acne, facial hair, bone loss, and depression. These are just a handful of the possibilities. Sometimes the side effects of the treatments last much longer than the course of medication itself.
Shortly after my diagnosis, I took a three-month course of the drug Depot Lupron which was originally created for prostate cancer but is now used for endometriosis and to suppress ovulation when preparing for IVF. The side effects I encountered during the three months I was on the drug where awful. I experienced a significant amount of weight gain and depression as well as nausea, headaches, and bleeding despite add-back therapy. There was a marked change in my moods and there were moments, especially towards the end of my treatments, that I felt like a completely different person. I was extremely irritable. I couldn’t concentrate and was constantly forgetting things. The side effects lingered long after the drug was out of my system. Before Lupron, my cycles were like clockwork. Never the textbook 28 days but regular enough where I could always mark a calendar. After Lupron, they ranged from 35-60 days which caused problems while we were trying to conceive. Can I prove that my infertility issues were a direct result of the Lupron? No. Am I certain that it played some sort of role in altering my cycles ad ovulation? Absolutely.
In addition to the hormone treatments available to treat endometriosis, other treatment options include surgery. Endometriosis can only be officially diagnosed through surgery, typically a laparascopy. In addition to the diagnostic surgery, patients often have to experience multiple surgeries throughout their lifetimes in order to control pain and the progress of the disease. Roughly 45% of patients experience a reoccurence of symptoms within the first year after surgery (webmd). Obviously surgery cannot be performed on a regular basis to control the disease and repeat surgeries create risks of their own such as adhesions that can cause pain, infertility, and bowel obstructions. Obviously, the more surgeries that are performed, the greater the risks.
I am at the portion of my journey with endometriosis where I know feel like I am chasing the side effects of my endometriosis treatments as much as (if not more) the disease itself . If you are a new reader, last summer I had to undergo an emergency surgery to repair a total bowel obstruction caused by adhesions that resulted from a surgery to remove endometriosis (that had returned after a total hysterectomy ). We are now suspicious that more scar tissue is forming and possibly creating an environment for another blockage to form. We have done all of the hormonal treatments possible (even the experimental ones). I had a total hysterectomy. We avoided HRT. The disease continues to return yet we have no options to treat it. Surgery, unless absolutely necessary, is out of the question as I am already battling the effects of previous surgeries and do not want to complicate the situation even further.
Unfortunately, I know that I am not alone in my situation.
Women across the globe feel completely out of options as there are not enough treatments available that can provide lasting relief. Currently the cause of endometriosis is unknown which makes finding a cure difficult and there is just not enough funding and research being performed to move in the right direction. This is why doing everything we can to raise awareness and educate the public is so very important.
Please link up your posts for Week 1 of Blogging for Endometriosis using the linky below! After linking up please visit at least the to links in front of you to help spread the love and support!
I think it’s so interesting to listen to other people’s stories. Even though we don’t have the same chronic illness, we still journey along the same road.
Oops, posted on the wrong post. Sorry Jamee!
That is nuts what you went thru! I don’t think I can go thru that you are a strong STRONG woman
I admire people like you that despite what’s going on with your life right now, you are still willing to help in the best of your abilities by sharing awareness. Thank you for being a motivator and inspiration to us! God bless you, Jamee.
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I’m at a cross roads and need some advice… I have had 3 laproscopic surgeries, and 1 major surgery to remove adhesions from endometreosis. I have 3 beautiful girls my youngest being 1 1/2 and my Dr said I would never be able to have another child bc my fallopian tubes were blocked, but I was blessed with a miracle baby I had been longing for for years:) ideally I should not try to get pregnant again I am 35 yrs old and my pregnancies have all been very rough and the last one almost didn’t make it here… should I go the route of hysterectomy and avoid anymore surgeries to control it bc it keeps coming back? I know I don’t need to have anymore children but I guess I feel like I’m gonna lose something if they do a hysterectomy. Any advice would be greatly appreciated.
I wish I could say that a hysterectomy would prevent the need for further surgeries to control the endometriosis but that is not a guarantee. I have had two subsequent laparatomies after my hysterectomy because of endometriosis and adhesions. They took my ovaries and I avoided HRT but still had issues with recurrence. It is not really the norm but it is a possibility. I was never able to carry a pregnancy to term but I would think regardless there is a sense of grief and loss that comes with a hysterectomy regardless of whether or not you’ve given birth. It is a very “final” decision so its not exactly one to take lightly. I would highly recommend checking out the site HysterSisters for information and resources about hysterectomies. They have a great message board and even have one specifically for endometriosis and I was able to find a lot of information and support there. You can also contact me any time if you have questions or just need encouragement or support! I hope this helps!
I have Endometriosis and recently I was told that I have to go into Lupron again. The first time they placed me in lupron, it was for 3 months. I honestly do not feel the same since. I have not gotten a period since then (almost a year ago) and was told I am not ovulating. I am not sure if one was related to another but I am so fed up with this entire process. Is there something else out there to do besides Lupron??? Again???
I am with you in that my body was never the same after Lupron. Before Lupron my cycles were like clockwork. Never the textbook 28 days (more like 35) but I could always, always mark a calendar and know when it was coming. Post-Lupron, my cycles were absolutely crazy ranging from 35-60 days and I either ovulated late and weak or not at all. It was definitely very, very hard on my body (I bled probably 2 1/2 out of the months I was on it on top of all the crazy menopause symptoms) and seemed to take forever to get out of my system. I really wish that I never taken it. What is your surgical history? Have you had excision done? I would be glad to chat with you more and try to answer specific questions if you would like to send me an email or find me on twitter or Facebook!
[…] shared many posts about how endometriosis has affected my life physically. I have shared about the long term effects endo can have on your body and how exhausting dealing with pain on a daily basis can be. Probably one of the most popular […]
I was 29 when I found out I had endometriosis. One night I came home crying my husband was like what is wrong. I told him I can sit or lay down or even stand up I’m in so much pain. So he said let’s go to the ER. That night the Er told me I had a cyst the size of a large plum on my ovary. They gave me some pain meds and sent me home. Told me to make an appointment with a doctor. So I did for months the dr kept saying yes there is still a cyst, I don’t know why you are even in pain so finally I told him let’s go in and pop the cyst. At this time we had no clue why I even had a cyst. So the Dr went in and popped the cyst with surgery. When I went back to the Drs office the nurse said wow I’ve never seen endometriosis as bad as yours. I thought what is endometriosis? I didn’t know I had been fighting this since I was a teenager. The dr told me to go on a shot called Lupron. So I did I never suggested anyone to do this ever I gained weight from it and I can’t get it off. I told the dr I wanted to have more children this was my goal. So I went 6 months on this stupid shot when I got done the dr looked at me and said oh I don’t know if you can ever have anymore kids. Ugh my head was spinning this shot makes some people go crazy and I felt crazy so I called my sister crying she told me to try a new dr. So I did I sat in his office as he read through everything he looked at me and said do u have any children I said yes one. He said I’m impressed as bad as your endometriosis is you should of never of been able to have kids. Maybe that’s why I’ve had 2 miscarriages. At this time I’m sorry to tell you will have to have a hysterectomy. I can do this
So I had the hysterectomy…….
It’s going on four years I adopted a little boy. So I have two boys I share my story because I feel like I could of prevented a lot of this if I would of known earlier in life that I had endometriosis.
My heart goes out to all of the endometriosis warriors