For the first two wonderful amazing years of our life together, it all seemed like a dream. Everything was a dream; no fighting (still don’t), no needing time apart only wanting to spend time with one another. Everything was perfect. It was just how I pictured a perfect marriage should be. We tried to start a family but were having a difficult time because my wife had PCOS (polycystic ovarian syndrome). After six months of trying, we sought the help of a fertility doctor.
February 2016, we had just moved in to our new apartment, and had all the hope in the world that this was our year. My wife started her medications and we followed the rules and guidelines for us to start our family. One night we were talking on our deck about the future, where we should move to raise our family, where we could afford rent and still be close to her parents as they were very excited for grand babies. When we tried to get inside, we noticed that the door had locked behind us and now we were stuck on our deck (thank the universe it was summer). After a long while, we got help and made it inside to go to bed. Then all of the sudden my wife’s pain and discomfort shot up from a high 6 that it had been at for at least a week to about a 10.
We went to the hospital, and after waiting for what seemed like forever, we finally saw a doctor. He said bluntly that my wife had a softball-sized cyst that was causing her pain. They never told us this on her last ER visit, which was 4 days prior to this one. At that visit, they brushed off her pain and she was given pills to “help” with her pain until it passed. How could they have not seen a softball-sized cyst?
After many more hours of IV pain meds and no eating, she had emergency surgery. She ended up her losing a fallopian tube because it had been twisted and was dead from the cyst. As she recovered, it was not long before she could not move again because the pain was back and at times was so much worse.
She stopped eating from the pain and lost so much weight. She was in such a dark place it was all I could do not too just cry and beg her not to give up. One night we went to another hospital, one because the ER had quicker wait times, but for another doctors opinion. That is when a simple sentence from that amazing doctor’s mouth changed everything. She said, “I think you may have endometriosis,” and asked if they saw any endometriosis during the surgery. These words will haunt me until my grave.
After what seemed like every possible test they could run, they finally agreed to do another surgery to look for endometriosis. Sure as shit, they found it and “burnt it out”. Since that surgery, nothing has changed, except for the worse. I have read what feels like everything I can find on endometriosis. I came across another man’s perspective on dealing with his wife’s endometriosis and it made me tear up because I know the feeling. There is a gut wrenching feeling of helplessness, a feeling as if you have let your wife down for not being able to take any pain away, how the only thing you can do is make sure everything is good and that she has nothing to worry about. I try to make sure she feels taken care of. I try to help her feel as good as she can while battling this.
The good days are amazing and it is as if all of this becomes a distant scary memory but it can change it a heartbeat. One minute everything is good and the next, she just wants to lay down and rest because the pain is kicking her ass. There are 3am pep talks that keep her grounded and feeling positive in a world of what has quickly become negative. There are special dinners brought home to her to make her feel more human than she has all day.
One of the hardest parts for me is the helplessness. It is an overwhelming pit of darkness to look in to the eyes of the love of my life and help her believe as strongly as I do there is still hope for a pain free future, that all of this will be nothing more of a bad memory for her and for us. The absolute hardest is to not be able to have children with my wife, that we made ourselves. It is a tearing feeling. One second I feel fine and the next it feels like my heart has been ripped out of my chest and crushed in front of me.
Since day one of her battle with this gut wrenching disease I told her, and have reminded her, for better or worse, in sickness and health. I said those words with all my heart and for the rest of my days and beyond I mean them. The only advice I can give for the boyfriends, girlfriends, wives and husbands is be there, don’t brush it off like so many do in the world. If it is three in the morning and they need to talk, listen. If they need something to help them feel better, get them that. Even if it is the last of your money until payday. They ask for it because it might just make it a good day instead of a bad day. Remind them you are not going anywhere and that you are in it for the long haul. It might seem like you keep saying it, but to them it means the world to hear those words. Tell them they are loved and supported in this fight. They may already know that but it makes them feel special.
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Beautifully written. Reading this in 2019. How are you guys?? Did your wife ever get excision surgery performed?
How do you convince the interns to cover the surgery I got Medicare Medicaid they will not cover it because I don’t have fibroids or cancer and I’m still at the age that I want more kids what I’ve been through the last 4 months I do not want no more kids
I am also suffering from endometriosis and I am just 22 years old . Just 4 days back I had surgery , I was having stage 4 endometriosis fingers crossed about the result. My life is miserable because of this disease. I can totally relate how much your wife is suffering from this disease. Fortunately I educate myself and get diagnosed it’s hard to make someone understand about the surity of the disease when all of your test reports were normal. That’s what happens with me all my reports were normal and I was having constant pain for 10- 20 days and my pain was becoming worse month by month. Every month I am in pain for atleast 15-20 days.
Is she a part of Nancy’s Nook on FB? Excision surgery is the key. Not burning, that often doesn’t help. There are many ways to get funding to see an excision specialist, including going on a payment plan with them. Demand excision. It’s the gold standard. DEMAND IT. A pain-free life is possible for her.
This was so great. I know understand how helpless my husband feels now & why he gets so frustrated sometimes (not with me; with my chronic illnesses, doctors & those that don’t take the time to understand). He has been fantastic in this battle! Can you share with us what other article you read by another husband so we can read it too? Thank you!
These are two other articles written from a partner`s perspective:
* https://www.hormonesmatter.com/wife-endometriosis-husband-perspective/
* http://sarahmaree.com/endohusband/
Oops Typo!
The correct article link is:
https://www.hormonesmatter.com/endometriosis-husbands-perspective-endo-husband/
Thank you for sharing your story. I have been with my wife going on 4 years and three if those years we were trying to conceive a child. It wasn’t until August of this year that we found out she had endometriosis as well a a cyst the size of a baseball. They did surgery to remove the cyst and burnt the endometriosis. These procedures helped with her extremely terrible pain. However, we still have not been able to conceive. Everything you’re experiencing I can relate to 100%. Thank you for sharing your story! Stay strong, and continue to be the amazing husband you are. It’s nice to know I’m not the only man who’s dealing with this type of situation! We too as men get very down and depressed about the situation, however, I try not to talk about my feelings to much because I know my wife goes through it really bad. I just try to be there, show her I love her, and convince her that no matter what not being able to Conceive a child does not make you less of a woman or a pointless woman.
You are an amazing husband. I cried when you wrote about learning everything you could about endo…I remember the feeling of wanting my (now ex) husband to just google it for five minutes so I could feel like we were a team. I can only imagine how challenging it must be to live with someone in this kind of pain. Your love is so obvious and so beautiful. Is your wife unable to try IVF? No tubes necessary for that…an option perhaps? I wish you both much love and healing.
To battle this disease it needs to be a team effort , both people in the relationship need to read and do research on it to better understand it and to manage it. IVF is just expensive and not a for sure way , she could still have the embryo not develop. Plus without the pain under control it could possible be very hard on her and after the baby is born it would be hard on her to not be able to hold/ play with our child. For as much as we would love to be parents we and I could not possibly try and push her through it right now. Adoption is always an option later on down the road when we have it all under better control.
Thank you tho
You are an inspiration! Have you looked into excision? Cutting it out. That changed my life and I have about 95% less pain. It was miraculous!
We are looking in to it my wife has an appointment with an endocrinologist and we will go from there.
I’m sorry for what you are going through. I suffered for a long time without diagnosis. The trauma of never knowing when the pain will strike i think is the worst. I’m glad to say after all the suffering and operations. I am going for a year without excrutiating pains, Fortunately I had 3 kids despite the condition. I hope and pray that your wife can get a break or relieve long enough to at least have a child! Don’t loose hope.
We remain hopeful but know our odds , at this point we are just hoping to get her out of the amount of pain that she is in and then we will re-evaluate the odds and see what’s what then
Thank you though for your prayers
beautiful story
Thank you