The Endo Profiles: Cate

Cate is one of the many women in Ireland who suffer with Endometriosis on a daily basis.  Some days are good and some days are bad but like many other women it’s a case of taking each day as it comes.  Putting a name to it was a major turning point and it’s about taking back the power from the disease, and not letting it dictate what happens in life. Sometimes easier said than done. 

Name: Cate                         Age range: 35-40fullsizerender

Occupation: Self-employed, I organise language camps for children in Ireland. I work from home a lot of the time and I can choose my own hours, but when a camp is on (6-8 weeks of the year) it can be very intense, with long days surrounded by kids. I also recently started a part-time job in a restaurant, for many reasons. Working for yourself can be quite isolating at times so it’s good to work with a team on a daily basis, chat about other things and meet people on a daily basis. And while sometimes after a busy weekend I think am I mad, I enjoy being busy and it takes my mind off other things. So far I’ve only missed one day due to Endo pain.

Diagnosed with Endo at: 36, having been to different doctors and consultants at various stages since mid-teens with period-related problems and some other issues. Having tried every Contraceptive Pill under the sun, with only brief respites from the pain, I just thought that’s just the way it was going to be.  After reading an article by another Endo-sufferer in The Independent I finally thought there might be an answer to all the issues put together…. I did get a diagnosis, (from a laparascopy) and a name, but I didn’t get a cure…

Most difficult thing about living with Endo: The Unpredictable Period….One month its manageable, I can function…. And the next month I’m bent in half, I wake up feeling nauseous, and I can’t walk around the block. It means you sometimes have to cancel long-standing commitments or activities, and not everyone understands that. It isn’t everyone you can say “I’ve got my period” to, and they’ll just get it…. So for me feeling like a Moaning Minnie or appearing flaky is the most difficult thing. The other aspect would have to be the planning that goes into the week you have your period, from what you can do, down to what you wear. Carrying all the extra things around with you and constantly checking yourself.

Worst/most regular symptom: After a lot of acupuncture sessions I’ve made great progress with my periods and the symptoms overall, but I haven’t had a full night’s sleep for a very long time. I sleep in 2-3 hour stints, if I’m very lucky I might get 5 hours in a row. I don’t suffer from insomnia, I fall asleep quite quickly but I can’t stay asleep. There is no relation between how tired I am and how much sleep I get. Pain in my side will wake me up, or the pressure on my bladder will, or generally both. So on average I will get up 2-3 times a night.

Previous surgeries: one diagnostic laparoscopy in 2015, however given that my ovary is stuck to my womb they didn’t touch anything as there were risks involved and they were reluctant to do too much as I haven’t yet had any kids.

Alternative treatments used: Acupuncture, Acupuncture and more of that please! It’s costly and you really have to be persistent in the beginning, as you might need weekly sessions for a few months…. but it really makes a difference. Diet change is also important and learning what food-triggers you have.

Helpful hints for others: Learn these two key words 1) Self-management and 2) Self-love. You need to learn about your condition, about the disease and most importantly you need to learn to speak up for yourself. I learned that the hard way at times, coming out from appointments that lasted 10 minutes with doctors and being none the wiser, feeling like I hadn’t been heard. Then I learned to go in there armed with information, lists, articles and a steely determination to be heard! Managing the disease involves managing your life and what’s best for you. But above all, you need to be kind to yourself, on bad days do what you need to do to feel a bit better and don’t feel guilty that you are not more active, or more outgoing or more enthusiastic on that particular day.

One positive thing to come from having Endo: I don’t think anyone would say they would want the disease, but it hasn’t been all bad. I’ve learned a lot about myself. I’ve met a fantastic group of women through the EAI support group that have given me a lot of information and encouragement in the past 12 months. Certainly one positive thing about getting a diagnosis was the relief that I wasn’t mad or weak, nor was I alone in what I was going through. I’ve learned that I’m a lot stronger than I think. Particularly since getting a diagnosis and being able to talk about it more, I have found support in surprising places and it has strengthened certain friendships.

For more information:

http://www.endometriosis.ie/

http://www.vitalhealth.com/endo-blog/what-it-really-means-to-have-endometriosis/

http://endometriosis.org/endometriosis/symptoms/

http://www.acupuncturecouncilofireland.com/

http://afpa.ie/

http://endometriosis.org/topic/resources/selfhelp-books/

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