My husband wrote about what it is like caring for someone with Endometriosis

March is awareness month for Endometriosis. Rather than me writing about my journey with it, co-fonder of Endometriosis Australia, Donna Ciccia, suggested Rav write a piece. As usual, he blew me away with his love and honesty.

When you marry your partner you take them in sickness and in health, and I knew when I was marrying Sarah Maree Cameron that she had more health issues than the average person. We were only a few weeks into dating when I learnt that Endometriosis was going to be a big part of our relationship.

I remember the first BBQ where I met my wife; her beautiful make-up, her stunning hair, how articulate she was, all of which made me weak at the knees and still does to this day. I thought “Wow, this woman is amazing”. I also remember the first few flare ups Sarah had due to her Endometriosis, wondering how I could help and hoping they go away quickly. Sometimes they do and other times you need to make a trip to the hospital because there isn’t anything else you can do at home to take the pain away. I often have to convince Sarah to go to the hospital when I can tell she really needs to go because often she doesn’t want to “clog up” the emergency room for what she says won’t kill her.

I am a worrier though. All of my friends say I stress too much but the thing I worry about the most is  if I leave Sarah for too long that I may not be there when she does have a flare up. I worry that she will have such a bad flare up that she will have a migraine and won’t be able to drive. I worry that she won’t have any heat packs or pain killers with her. I just worry. In that worry, I can lose myself.

Partners or carers for anyone with a chronic illness would feel guilty for saying this outloud but you give up a lot to look after the ones you love. You give up going to the pub with your mates because how could you possibly enjoy yourself when your wife is curled up at home in bed due to her pain? How could you go away on a boys trip away when the person you love can’t even drive to the shops to get groceries because their flare up is so bad that they can’t stand up straight? So you turn down offers to go out. You make up excuses as to why you’re not going out because you fear your mates won’t understand. You tell your mates “next time” but some of your mates stop asking.  And so, the worrying continues.

1 in 10 women have Endometriosis and yet so many don’t know about it. It can be hard for men to talk about but I feel like I have gotten an honours degree in gynaecology due to Sarah’s medical issues (Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome, Cervical Cancer). I can rattle off Endo stats as quickly as I can tell you about my beloved Manly Sea Eagles and Sydney Swans. I have also learnt what works best to relieve her pain so that we can be proactive and not reactive to her symptoms. Heat packs work well so I have got them scattered around the house for when Sarah needs them (you should see how quickly I can get to the microwave). I would like to add that we are onto our second microwave in this relationship as the first one burnt out. I also discovered stick-on heat pads, which help Sarah get through pain while out of the house.

The day we got engaged.

The day we got engaged.

We have a few friends in our circle who also have Endo, all with varying pain and symptoms. It is great to be able to speak with your mates about how they help their partners but I have met some people that have their head in the sand about the condition. You need to fully understand what Endo can do to a woman’s body. You need to sign up to being a spokesperson to help end the silence. You need to know that it can only be diagnosed through surgical intervention. You need to know that some women will only have one surgery and others, like my wife, will need them every 6-12 months. You need to know that it doesn’t matter if you’ve planned to go camping or hiking for the weekend; if Endo visits, then you may have to stay home. You also need to know when to encourage sufferers to get out of the house, go to the gym on the good days and watch their diet so they aren’t having food that could cause a flare up.

I’m not just Sarah’s husband, I am her Endo husband. It’s easy as a carer to take on more responsibility around the house but I need to keep an eye out for when Sarah is getting frustrated. Who would have thought someone could be so desperate to do housework? I often hear Sarah say “I can do it” when her face is telling me that she can’t. I had to learn when to let her push through the pain doing a simple task like gardening and when I have to step in because she can’t bend over anymore. Once you master this fine line of knowing when to help or take over a task, it will strengthen your relationship.

Endometriosis will teach you a lot about yourself as a person and will prove the strength of a relationship, but most importantly it will teach you to do what needs to be done and use this as motivation to achieve your goals. It also teaches you that there is no such thing as “too much information”; details are not spared. I am more than happy to talk to family, friends or strangers about Endometriosis because it needs to be talked about. I am happy to be part of what is normally seen as a female community, because I want to be a supportive partner. I want to be the best Endo husband ever.

Sarah Maree works with Endometriosis Australia hosting events and helping raise awareness to educate people, open up dialog for the disease and campaign for a cure. For more information or to make a donation, please head to www.endometriosisaustralia.org

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  • Kimlan Lau

    Thank you for sharing this. I have Adenomyosis & have been through lots of ER & doctor visits, not being able to work, no support from the gov’t, cancellation of plans, people not understanding, etc… Only one surgery, I cannot imagine having to have a surgery every 6-12 months. All the best to you & your lovely wife.

    • Thanks for your comment, Kimlan. Rav is amazing and I am lucky that he chose to stick around through everything. A great support network gets you through everything. All the best xx

  • Corrine Simonsen

    I just had a hysterectomy for endo and adenomyosis. I’ve heard that a hysterectomy won’t necessarily cure endo and am a little discouraged because 2 weeks post hysterectomy I was admitted to hospital because of a flare up. Two large cysts were moved and adhesions and scaring that weren’t there two weeks ago. 🙁 I’d love to find a cure. But up side no more adenomyosis. You mentioned food, what foods do you suggest be avoided?

    • Joanne Samuel

      Fried foods, caffeine, meats especially those with lots of growth hormones.

      • Avoiding caffeine can be so hard haha but will worth it xx

    • I know a lot of women who follow the FODMAP diet. There is this website that I just stumbled across http://www.endometriosisdiet.com.au/

      And you’re right, an hysterectomy doesn’t cure Endo. For me, my Adenomyosis was behind a lot of my day-to-day pain. But Endo flare ups are awful. I do have had many large cysts and have had multiple ruptures. One was so bad that I ended up with septicemia. The good thing is though, your growths might slow down now that you’ve had a hysterectomy. I had a few complications after mine as well, but I am 6 weeks post operation and every week gets better. All the best with your recovery x

  • Janice Farrugia

    My goodness! I never thought such caring people such as yourself existed. I wish you and Sarah all the best. You make an exceptional couple xo

    • Thanks for your comment, Janice. Rav is the most wonderful husband. He it truly my best friend and I am so thankful to have his support through everything. Wishing you all the best xx

  • Daisy Glasscock

    That’s wonderful my granddaugther has this .and so many do not under
    Stand how painful it is.so glad your husband wrote this.

    • Thanks, Daisy. Rav was so excited to share what it is like from his side. I hope your Granddaughter finds all the support she needs. When you find an amazing team of Doctors, it makes everything so much better. I researched and got recommendations for the specialists I see and I am glad I made the change from being referred to people I’d never heard of or who friends hadn’t seen. Wishing you all the best xx

  • Nicole

    This is awesome! You’re an amazing husband. Thank you for trying to help us. I had a hysterectomy in 2015 at 31 years old. My endometriosis has come back twice and I’ve seen some of the best specialists. It’s now all over my ureters and bladder and possibly kidney. I hate this disease!!

    • I am so sorry to hear this, Nicole. It is truly awful but I hope your specialists are able to help you through everything. Appreciate the good days between the flare ups and know you’re never along in those bad days. Wishing you all the best xx

  • Monique Art

    Rav, I’d have to say you are on the right track and I applaud you! I’m 31 and have been dealing with endometriosis for years. I haven’t done an hysterectomy because I’m too young. There’s still hope. If I’m meant to have children, I will have them. Although birth control aren’t great because of the symptoms however, I am on birth control and it also allows me to have a life. It depends on her stage of endometriosis. I’m on the last stages. I’m doing great but I don’t want to be on birth control forever but it has helped me to have some what of a life. Diet is extremely important. Exercise is important so that the scar tissue on the inside doesn’t form so much and build up. You have an awesome husband Sarah. This is the first story I have heard from a males point of view so thank you for sharing.

    • Rav is pretty special, hey? Everyone experiences Endo differently and some methods of keeping it under control works for certain people and not others. Trial and error is the only way to see what works. I had to come off birth control years ago after being diagnosed with a blood clotting gene. To be on “the pill” put me at a greater risk of stroke. As my Dad, who I got the gene from, had a major stroke in 2011 I had to come off it. A lot of people asked me why I “jumped” to a hysterectomy so early but due to the fact that I can’t take a lot of medication, it was hard for me to control it any other way. I was admitted into hospital 15 times last year – separate from my two laparoscopies. I couldn’t continue life that way, which is why I made the decision. Having great specialists to help you find your way through managing life helps so much and I am lucky that all my specialists supported me with my decision. I hope you’re well and wish you all best xx

      • Monique Laboy

        Hey, your right everybody is different and goes through Endo differently. But I hope your able to have a better life than before. I hope for nothing but the best for your health ❤

        • Right back at you, lovely! Sending lots of love your way xx

  • Rivka Lutwak Levy

    I’m so glad that he wrote that. I often talk to my dear loving husband and try to convince him to talk about it or write about it so he won’t feel alone in this ship. I belive it’s harder for our beloved ones then it is to our body to suffer through the flare ups of that disease. I know that, I’ve been in both sides, and when I was a child I was more often on the other side. I was the healthy one in my family when my parents went on and off to several hospital treatments for several health issue, and even my sister was always sick. I finally got sick too. At age 11 when I first got my period. Since then every month things got worse. Lots of migraines that holds for days, 14 days heavily painful bleeding, stomach aches and diariyas that I thought cam out of no where, weakness, digestion problems, urea problems, orthopedic problems, psychological problems, which the Drs loved to use as an excuse for my suffering for years. It took me 16 fucking years to be diagnosed for Endometriosis. And the one who suspected that I might have Endometriosis is my sister right after she was diagnosed for Endometriosis after she had an SOS surgery. My husband help me a lot these days. He is not the person to make me go to the hospital like your husband, but when he can he comes with me to the hospital. And he helps me a lot at home. And for a long time since we started the fertility treatments he is the only source of our incomes. It’s funny that I have to do fertility treatments, but it makes me get sicker then usually. I hope a cure will be found soon. Love and Light from Israel

    • 16 years to be diagnosed? My heart aches for you, you could have had help so much sooner. At least you have it now. Some women find their symptoms with Endometriosis get worse when going through fertility treatment, so you are not alone there either. Wishing you all the very best to you and your husband xx

  • אייל גלברג

    hi I’m also a endo husband😊thanks for the beautiful words

    • Rav is so happy that his thoughts and feelings have been so well received. Thanks for the love, I will be sure to pass it on xx

  • Tim Deere

    I am an endo husband too, but without knowing other families in our situation, it has been hard to know how to support my wife as well as Rav has been doing. We have been blessed with a beautiful boy through IVF, but my wife still has to endure the pain that this horrible disease brings.
    Sadly two months ago, my wife and I separated, I am sure my inability to communicate about the stresses that Endo puts on families has contributed. Endo month is a great initiative.