Sunday, April 28, 2013

Endometriosis & Relationships



I started this post back around Valentine's Day when lovey dovey posts were filling my bloglovin feed [speaking of which... Google Reader is closing down if you couldn't tell by the thousands of other posts on it recently - follow me here on bloglovin instead]. I forgot about it for awhile, until the Blogging for Endometriosis Awareness social impacts theme, where I then edited it again, but then never got round to finishing it AGAIN. I decided to stop procrastinating and just publish it now, so here is my perspective on living, and dating, with endometriosis.

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I am currently single. I have been "officially" single for awhile now. I have not seriously dated a new guy since I was diagnosed over a year ago. In the blogosphere, and even within the endo circles I know outside of the internet, that seems to be quite rare. I don't know any other single women with endometriosis. I know I can't be the only one out there, but sometimes it feels like I am! (If you are single with endo - please speak up!)

Despite the fact that being single removes some concerns that come with endometriosis (e.g. infertility, pain with sex/intimacy issues), it comes with its own challenges. No one to comfort you or give you a back massage when you're not feeling well, no default person to drive you to surgeries or the doctor, no one to make you a heat pack when you need one (thankfully my housemates step in for this one). Sometimes the fatigue can make it difficult to get the energy to get out there and meet new people, which definitely limits your chances of meeting a potential partner. You're probably going to have to explain to some guy that you may not know very well what is wrong with you quite early on. (Having unexpected back spasms so bad that you can't move and end up sobbing in pain forces that topic into conversation pretty quickly.) It also isn't too helpful when your doctor tells you that you should get pregnant in order to "treat" your condition (uh, HELLO, where am I supposed to procure a father? Also, no.) It also doesn't help too much when people tell you that you should settle down already because you're running out of time since endometriosis makes your biological clock tick that little bit louder.

No guy I have been on dates with since my diagnosis can claim ignorance to my condition. Since it affects many areas of my life, I tend to talk about it a lot, and so naturally it will come up in conversation fairly early with guys. I'm very open about all aspects of endometriosis, and a lot of the guys that I have brought it up with have been quite interested to hear how common it is. Some people might think that bringing it up so early is a bad idea and will scare guys off, but I think that if they are scared off by me merely mentioning it, then they probably can't handle actually living with it and we're both better off knowing that sooner rather than later. (The ones that think periods are gross are ruled out pretty quickly too.)

I've had supportive boyfriends and I've had less-than-supportive boyfriends. (Note - these stories are all pre-diagnosis.) One of my boyfriends thought that I was faking the cramps as a way to con him into spending more time with him. Safe to say that that relationship is now over.

However, he was not the only one.

I have had very decent guys turn into less-than-desirables when I've been in pain/dizzy. One time I got extremely dizzy and nauseous with cramps when out with a boyfriend. We were about to attend an event that he really wanted to go to (I did too). However, when I get these dizzy spells, the only solution for me is to go home and sleep for a few hours. I asked him to drive me the ten minute drive home before he went in to the event as I was worried about having a car accident if I drove. He was not happy with this idea and asked me to have a nap in the back of the freezing cold car while he went off and attended the event for a few hours. I understand that it was disappointing for him to have to miss part of the event, but I can tell you that no one is more disappointed than me when I have to miss out on entire events because of my health. (He did end up giving me a lift home and then returning to the event - he is a nice guy.)

I am not telling these stories to have a whinge, or to point the finger. I am telling them to explain the extra challenges that come with having endometriosis. The unpredictability and frustration of having endometriosis is difficult enough for me to cope with in my own head, I can't blame guys for not understanding it or being sympathetic straight away when they have not been raised to treat it seriously.

Dating a woman with endometriosis will most definitely come with sacrifices, but I think that dating anyone will come with sacrifices. The sacrifice that comes with dating a woman with endometriosis is more in your face and uncertain now, but I think it also has the potential to build a good foundation for a strong relationship by facing trials early.

As for being single with endometriosis, I believe that it has made me a stronger person. I know that I can face this without a partner and I hope that that knowledge will make me a better partner and patient in the future.

15 comments:

  1. I was diagnosed with endometriosis at age 21, I have 30 years now and I've been operated 3 times, but I changed my diet drastically 6 years ago and now I'm much better, although menstruation pains persist and invalidate me sometimes.

    My previous partners couldn't understand what was happening to me, they tried to support me but is hard for them, and all the realationships finished because we were burnout, it's too difficult for them and for you. You have to explain all the time the pain you are suffering while you menstruate or have sex.
    I am currently without a partner. On one hand I am more relaxed because I avoid having to explain my pain or rule, but then again sometimes I miss having someone. Although I've reached a point where I'm better off without a partner. I'm not telling I won't have someone anymore, but now I'm better alone.

    About the food, you can reduce the effects of the disease by not eating meat or soy (have many hormones). And you must eat seaweed (wakame, kombu ...) red fruits, and drink white tea.

    You can see that you're not alone in this :)

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    1. Thanks for commenting Kira! It's so nice to know that I'm not alone and that someone else knows what it's like :)

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  2. I have a story. I was diagnosed a year ago, and I am 30. Literally, the day I was diagnosed, my now ex boyfriend and I started dating. I asked if he was sure he could handle this with me, and he said yes. The relationship was strained periodically because I was on various hormones and trying to schedule surgery. Afterwards, I went to the IVF doctor to find out about fertility and what not. She said it is better to do it sooner rather than later. After discussing these visits with my ex, he said he was ok. I am not ready for kids and neither is he. He assumed I needed to have kids next year, and I was put on some drug to help me maintain until then. I hate the drug. So, I confided in him. Then we dropped the topic. Next thing I know he breaks up with me saying he can't have kids next year. As I always said, we can wait but my chances dont increase with time. He wants to start 4-5 years from now. Because I couldnt guarantee I could do that, he dumped me. He actually asked me what are my percentages for conceiving later! I don't know! He would never adopt and would have likely left me later if I didnt get pregnant. I am SO upset and heart broken and am concerned now about dating anyone because of this. It is a horrible feeling.

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  3. I just got diagnosed and it's been an awful ride. But I am currently single. My last two relationships ended because of what was happening. I am glad to hear that there are others facing the same problems as me. It's so unbelievably comforting. I do have to agree it's definitely made me a stronger person, yet it also scares me for future relationships. I like the idea of bringing it up fairly early. It really allows you to see if that person is going to be willing to stick by you when you have an attack.

    Thank you so much for sharing.

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    1. Hi Kelsey, thanks for commenting. I'm glad that me sharing helped you... sometimes I feel like maybe I'm sharing too much but then it doesn't feel like I'm oversharing when people like you come by and say that it helps and that you feel the same way too. :)

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    2. No there isn't enough talk of this suffering. Don't stop!!! We're suffering in silence otherwise. Thankyou for posting, I take my hat off to the women coping alone. I really do admire you

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  4. Iv had endometriosis since I was about 13.... 2 years after my periods started. Over the years it has got worse, when I was at home my mum would look after me and visa versa. And now at 21 my fiance looks after me, because I couldn't manage alone...If he wasn't around I would be foodless, drinkless for 5 days. I would likely stay in the same place for the course of the time.I have been operated on once, I was about 18. And the gynaecologist told me to expect it back in 2 years just as aggressive. Here is am 3 years later, just as he said. Aggressive endometriosis is back, he removed it from my bowel, but it's definitely all back.I'm back at square one and I feel at despair,I don't want to have children because of this disease, it's frightened me, because of the statistics, and the potential miscarriages, and the pain of labour. Truthfully endometriosis has put me off having kids. right now I'm living with my parents so we can save money to get married in February, my parents are away at the moment and I'm struggling to look after my self.The pain is unbearable, iv just been crying and crying.paracetamol doesn't touch the pain, codeine constipates,and mefenamic acid aggravates my bowel disease. I searched this post because I wondered what it was like for women with endometriosis who are single, and have nobody to look after them. Because you need looking after at that time. Sincerely.... A woman suffering xxxxxx

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  5. I would like to say.. That being honest about your health is beneficial... I told my fiance that I had a bowel disease the night after we got together, 3 weeks later I was admitted to hospital because of it.. And who carried me when I collapsed? Him! Who sat at my bedside with concerned eyes? Him.
    And I told him about my endometriosis pretty much first period too and Who ran to get me sanitary towels when I started my period whilst we visited a friend? him!!
    Who went to the shop and bought all the food I was craving, who got me hot water bottles on beck and call...who knows what sanitary towels accommodate my period flow.who stops when it's hurting me when making love (even though he is really enjoying it) HIM!!! That's who, and I am so grateful I have a beautiful man.From day one he showed he cared. We started dating at 17! if I hadn't have told him. Imagine the mystery I would have been creating! in my opinion.. If a man cannot look past a women's imperfection,including health... Then he isn't able to love her properly.not whole souled.unselfishly.... And I guarantee that unselfish love is the most fulfilling. Xxxx p.s it's the same anonymous commenter

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  6. I was diagnosed with endometriosis 5 years ago, and it has ruined my life. I had the operation to remove a cyst from ovary and was told i had endometriosis and that i should have a operation to remove it. What a mistake was that operation was. The only pain i had before this operation was from the cyst, and once the cyst was removed i felt 100% better, until i was told that i should have the endometriosis removed in a second operation. Now i have more severe pain from the endometriosis operation to the point that i could not stand up for 15 min for 2 years, severe pain when menstruating, and severe back pain where i need to use pain killers, hot water bottles, anti inflammatory gels on my back and stomach, not to mention fatigue that comes with it. So basically when i come home from work, i don't want to deal with anyone. And if there is an event on, i have to predict if i will be OK to attend it, make sure there is a bathroom in case my bladder gets full, cause i pee pretty much every hour of the day at work thanks to the catheter that was placed in my bladder for the laprascopy (endometriosis) Now i haven't dated anyone in the last 5 years simply because i know that i will be a burden or seen as a party pooper because of my condition, i am already seen this way by co-workers because i cannot attend events with them, so logically speaking, if i do date someone, it will be a short fling probably lasting a month , simply because of my condition, the men will not be patient with me, the men will choose a woman who doesn't seem depressed all the time, or in a bad mood all the time. I have no social friends outside work because of this, and i don't really socialize at work because of this condition. Before this endometriosis operation which i believe i did not need, i was a very out going person, i dated, had a great life, could stand up for long time, was very fit, excersied alot. I believe my doctor ruined me for the sake of getting samples of the endo for his test and experiments. Now who would want to date me ? I am 35 years old, live at home, paying of a house i don't live in, and feel like killing myself. Anyone wants to date me ?

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  8. My Gf just recently broke up with me. She's had endo for several years now and it's effected her life greatly.
    She told me the first day we met that she has endo, and explained it to me what it was and how it effects her and so forth. As time went on things seemed great, yea she'd say she had pains but to me it didn't seem like anything she couldn't handle, which was my first mistake. I didn't take the time to really try and understand what she was going through on in the side. We didn't talk much about it. There were a few times she did have to cancel on me but I was told to expect that. I didn't take it personally and I never got mad, I just wanted her to get better, if that meant staying home, so be it. I was also told she likes her space, back rubs wouldn't help and nothing I could do would help. I over looked that, I thought my presences was going to be stronger then that. I told her that her having endo was NOT going to be a problem for me. and it wasn't. She still expressed concern because a girl before her I dated had POCS, again something I knew nothing about. She doesn't know the REAL reason why that other relationship ended,but that stuck with her. One of the nights she canceled on me I made her a little get well kit.
    Wine, Study flash cards and Nurse prep course book, and a Thinking of you balloon. I figured for those times she wanted to be alone or if I wasn't around it'd help get her mind off of it.

    When she broke up with me she said she felt like I wasn't understanding of her conditions. I was asking to go out, go here or go there. (Which is what I was use to) I wasn't use to staying in all the time. Finding this blog and reading how this does greatly effect you women i can say has opened my eyes. It wasn't that I didn't believe her or that I thought she was faking, but Do understand a guy isn't ever going to go through this, it's very tough to grasp that this is worse then your normal period.

    If a guy you ladies find cares that much to try and stick out the worse with you, Will actually take you to the hospital and stay up all night with you, call of work. You gotta be fair and understand this is new to him to. He's not gonna be perfect. I've learned a lot from this blog and from the short relationship I had. I didn't wish it ended.

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    1. Oops, I just wish it didn't have to end

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    2. Oops, I just wish it didn't have to end

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  9. My girlfriend has been diagnosed about a year ago, she's recently had surgery and it hasn't helped as much as we both hoped so I'm doing a bit of research to try and help her out as much as possible. Has anyone found any 'home remedies' or foods that massively help the pain, and also food/drink that we should defiantly be avoiding? Been warned off spicey food and carbonated drinks but any others?

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  10. Hello

    After a history of painful, heavy periods and having had an ovary removed,I was diagnosed with endometriosis. Because that my remaining fallopian tube was blocked, the only chance I and my husband had of conceiving was through IVF.
    The condition meant that fertility treatment was very painful in spite of the treatment it wasn't successful .

    "From the age of 17 or 18, I had very bad periods, but my GP seemed uninterested. At 21, I had emergency surgery for appendicitis and awoke to discover I had also had an ovary removed, due to a large cyst. Although I had a histology (examination with a microscope of tissue removed during surgery), endometriosis (a condition in which endometrial cells, which normally line the uterus, implant around the outside of the uterus and/or ovaries, causing internal bleeding, pain and reduced fertility) was not diagnosed until much later.
    With all these challenges, the possibility of getting pregnant was very difficult...I read an article of how Rahany Herbal Center, that helped a woman to conceive with the use of the herbal treatment...I contacted the address rahanyherbalcenter@yahoo.com....I ordered for the herbs and it worked. I conceived through the use of the herbs as instructed also. Contact rahanyherbalcenter@yahoo.com for help.

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