Yesterday I received my copy of the newly released endometriosis book (I think there was a previous post on it so I decided to order) (see pic). I was reading it on the tube yesterday and it was so hard not to burst into tears. So much resonated with me and hearing other people's stories in the book was very comforting with an illness that so few people really understand the impact on pretty much every aspect of daily life. In particular I got emotional reading about endo and partners. I'm in a fairly new relationship of 6 months but moving in with him next month. My symptoms became severe probably a month into the relationship - before then I wasn't experiencing daily pain, only after sex. It's been very draining but my boyfriend has been absolutely fantastic and could not be more supportive. He cooks, runs me baths, attends hosp appts, wakes up in the middle of the night to refill the hot water bottle and put in my suppositories (!! Keeping the romance alive). There are still days where I want to withdraw from him, the fear of being a burden, the impact it has made on our social life and inability to commit to future plans. Ultimately I fear that eventually he will tell me he can't cope looking after me anymore even though he constantly reassures me he is very committed to the relationship. I actually gave him the book to read yesterday and it was so nice to see him digesting it and cementing his understanding of the condition and pointing bits out to me that have been relevant to us. (I would really recommend if you have the book getting your family and loved ones to read).
I was interested in hearing about everyone's stories with regards to your relationships. Have your partners been supportive? How has it affected your relationship on the whole? Have any relationships broken down as a result of the impact of endo? A few stories I read in the book mentioned this - was really heartbreaking to read. And how do you let your partners feel special and appreciated? I often let my partner know verbally how much I appreciate him but it makes me sad that I'm often too tired to treat him to a nice meal out or trip to the cinema etc.
Would love to hear everyone's experiences xxx
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my diagnosis hasn't been confirmed yet. I am interested in replies to this, as I am feeling so unattractive (mainly how bloated I am) that I never want to be romantic with my partner. He is taking it personally and obviously with period pain I can't go out and do things like a normal girlfriend either.
Ah you're not alone! I used to go to the gym 3-4 times a week and haven't been able to go in the last 2 months - being stuck indoors alone I resort to food (endorphins and all that jazz). Although I don't feel like I've put on a significant amount of weight (still fit in my jeans!) I just feel so sluggish, low mood and unattractive. I don't like the thought of my partner seeing me naked anymore. Our sex life is nonexistent with the pain anyways but we're just having to resort to oral sex to be intimate. Have you spoken to your partner about how you feel so that he knows it's not personal and you find him attractive? I've made more of a conscious effort to compliment my boyfriend as I think it helps with his self esteem too.
I met my partner while at university, and I was on the pill (had been for about three years); he was aware I had heavy periods and bad period pains - great intro to that! He always felt lost during those times. The pill then was a method of contraception and that I could control when I had periods - I could take up to 6 packs back to back. It was after we'd been together for 6 ish years, the long term effects of the pill were taking it's toll; low sex drive, low self esteem, weight gain, period pains were worse, that we decided I'd come off it.
Initially all was manageable for about two years, everything was fine, giving us time to focus on our lives and our careers. Then two years ago, just like that everything got worse, post sex was painful, I had spotting after, periods were that bad I'd have headaches, dizzy, needed a day off sick. This was when his nurturing side came in, he'd care for me when I was down, do stuff to help me feel better; even if it's just let me sleep.
My now husband (last year!) was the one whom encouraged me to seek help, see my GP as he could see what I was going through. Ahh I even had a period on our wedding day! I don't know how I coped! I finally had my appointment with a private consultant and my husband wanted to come along. That was the best feeling ever, to know that he cares and to see that this affects him too, he want's to support me through this emotionally.
I had my diagnosis laparascopy for endometriosis and had some removed at the same time, they found all my organ stuck to each other in my abdomen. That was mostly sorted, it was great that he was there for my recovery, even while groggy in my first few hours coming round. The next two weeks (and months) we've reconnected; took things slow, he care for me even when I wanted to push him away. I admire him for his patience!
We've learnt to appreciate each other's company, not take stuff for granted, see how we feel each day, take each day as it comes, I accept his help when he offers, we are honest with how we feel and we talk about everything (everything....including periods, heaviness, buying painkillers, buying pads, how sex feels during sex, trusting me to say something if it hurts).
Advice for others in a difficult situation; If your partner wants to help, let them, and appreciate it, they care. Ask them to come to appointments; you care how they feel and you value their thoughts plus it means if you forget something they can speak for you, it shows the doctor that you're not alone. Talk about what you're going through, the pain, where it is, what you need to help make you feel better. If you keep a month / cycle diary share that as he can plan around when you have good days. Answer his questions he has. There's a video out there about endometriosis sufferers partners; their story, see if you can find it, it may help. If he wants to spoil you, let him. If sex is a big part of your relationship and it hurts, there's other things you can do, that can help you get to know each other, perhaps set aside some time to yourselves too. Be open and honest, and if he cares he will stay around; the worst thing from his view is wanting to help the person he cares about and you shutting him out.
Thank you for your reply - was lovely to read. I shall definitely take onboard your advice thank you xxx do you know where the partner video you spoke about is?
I can't find it at the moment, I'm sure I had it bookmarked. I'll need to do some more searching later. I did bookmark this story that shows it from the male perspective hormonesmatter.com/endometr...
A book that enlightened me: Endometriosis: Our Pain is Real
The video or even stories from the male perspective is somewhere, as I recall it being part of a project.
I was just reading this post and my eyes filled up with tears. I’m currently having problems with my partner and I’m feeling like he’s going to end things because of the no sex drive and pain etc but after reading this it’s gave me abit of hope x
Tinkerbell I felt exactly the same reading the book on the train - was amazing to be able to identify with other women's stories as it can be very lonely sometimes dealing with the pain. I would really recommend you give the book to your partner to flick through or any information from endo sites if you haven't x
Thank you for sharing this book ,I have just ordered it 🙂
I am 33, and I’ve been with my partner 14 Years. He is very supportive even though we don’t have much of a sex life at all due to my condition, which makes me feel very sad 😢
I’m looking forward to showing him this book so he can learn more about what I’m going though.
I don’t normally post on this forum (just read everyone’s experiences), but I thought I’d post about how my relationship works.
I’ve been with my boyfriend for 9 years now, and throughout that 9 years he has witnessed me in tears from the pain of my periods, had to put up with my anxiety & depression because of the pain I am constantly in, and essentially pick up a lot of the work around the house when I am sick.
I had a laparoscopy in a January where they found I had stage 4 endo & a number of cysts etc. from my experience my boyfriend has been amazing. We haven’t had sex in about 8 months because of the pain, and he has never complained once - he always says to me how much he would love too, but not if it hurts me, because then it’s not enjoyable for him.
He comes to all my appointments, he took a week off work post op to look after me, and he always wakes up in the middle of the night to fill up my hot water bottle and make me peppermint tea. I don’t think he quite understands the extend of the pain I go through - but he certainly does all he can go support me and be there.
I think endo is a really hard one, because it’s not visible or or “tangible” sickness that people can relate too... so you almost find yourself defending your sickness to others so they will take it seriously, sometimes I still find myself doing that with my partner. However, for the most part he is amazing.
The best advice I could give to anyone who is facing challenges with intimacy and starting to withdraw from their partner is to talk about it, be super honest, remind them that you still love them & are attracted to them, but that you are sick.. and you need to talk about it. If they are willing to listen & support you, then you’ve got yourself a keeper.
Thanks Kim - Sounds like you have a wonderful partner And I totally agree about what you said in your last paragraph. My partner has been great and I think it's all too easy for me to talk myself into thinking he's had enough when I'm feeling low. I'm at the stage of waiting for diagnosis and constantly worry that 'it's all in my head' when I go through periods of not feeling too bad. It places a lot of strain on my relationship as I worry if they don't find anything in the lap, it will look like I've made it all up. I'm almost wishing they do find endo so that I get the recognition from my partner that I am sick and need support.
"...so you almost find yourself defending your sickness to others so they will take it seriously" - This couldn't be more true for me and is why I gave my partner the book to read - sometimes I know he thinks I'm being whingey or lazy so it was good to see him read the stories that other women have gone through with regards to their symptoms.
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and obviously with period pain I can't go out and do things like a normal girlfriend either. 
And I totally agree about what you said in your last paragraph. My partner has been great and I think it's all too easy for me to talk myself into thinking he's had enough when I'm feeling low. I'm at the stage of waiting for diagnosis and constantly worry that 'it's all in my head' when I go through periods of not feeling too bad. It places a lot of strain on my relationship as I worry if they don't find anything in the lap, it will look like I've made it all up. I'm almost wishing they do find endo so that I get the recognition from my partner that I am sick and need support.
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