Endometriosis UK
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Feel like I’m missing out on social events

Sorry if I’ve been complaining a lot past few days but I’m feeling so low and no one to talk to.

During my period I’m bed bound and in agony, my best friend is going out today and asked me to go. She went out yesterday as well and I feel like I’m missing out being an 18 year old, going out drinking and having fun etc. Instead I’m stuck in bed with a hot water bottle.

Hate to cancel or not being able to plan anything in case I’m in pain especially during ovulation and my period (worse pain ever) 😫

She doesn’t understand and thinks it’s just bad period pains and that I’m just making it up

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Hi I feel just the same. Spending years having spinal surgery and now left in pain. Also the pain I get when I have my period is horrid. I can not get out and about. I find some people don't have an understating of long term pain and the effect it can have on you. I find some of my friends are understanding and others look at me like I'm nuts. I hope you feel better soon xx

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Thank you and yeah even my parents don’t understand the pain I get into on my period. Xx

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I am lucky that my other half lives with a lot of pain so he knows what it is like to be in a bad place. I have lost a few friends over the years due to keep saying I can't go out then they give up asking but saying that I have also gained some amazing friends that have don't live in pain but are understanding.... hope you find some relief xxx

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I get it 100%, i now have absolutely 0 girl friends because they’re attitude is “we bleed, we cramp, but we can still go out and get wasted!!!” “get over it and come out”, when they don’t understand I don’t just bleed and cramp, i writhe in pain and cry, it’s so frustrating because you’d think your girl friends would get it so much more! My saving grace is my best guy friend, he is always there when I need him but knows when to leave me to “be a lady in peace” as he phrases it, how stupid is it that a guy can grasp the fact I can’t always go out but girls can’t?!

when it comes to social events and stuff we never plan stuff in advanced, we always take things day by day, have you tried asking your friend if you can do that? Spontaneous as stupid as it sounds is so much better than meticulous planning, even if you messaging her “hey wanna go up the pub?” If you feel okay, would that work? try explaining to her you have to take everything day by day, hour by hour, and that sometimes you might have to come home early and not stay out late? It’s hard because you aren’t choosing to miss out on events and socialising with people, but you don’t always have a choice when your uterus starts to protest! There’s a fine line between pushing yourself and actually having fun and then pushing yourself to the point where you’re violently ill, you need to find that fine line, being a teenager is a hard enough, but being a teenager with potential endometriosis is a whole different ball game 😫

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Yeah my boyfriend doesn’t really understand, he tries bless him but he doesn’t know what to say on the phone (long distance relationship). If he was here, it would be different.

Atm I’m already feeling low as things seem to getting worse and I’m so scared what they might find on the lap and will it affect my fertility etc later in life. Apparently the endo specialist has felt large lumps of tissues in the ovary area. However my ultrasound last July said things were clear.

She says the same thing “I still go out during my time of the month and I’m in pain” but she’s not crying in bed kinda pain like we are. Or constantly feel sick or being sick xxxx

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At least your boyfriend is trying bless him!

I really cried when I found out my fertility was at risk but there is more than one way to become a mother, adoption, surrogacy, ivf, even being a step mum, because as much as I want to carry my own babies I know deep down that when I comes down to it that it doesn’t matter how that baby ends up in my arms, all that matters is that child is loved, not how they got here.

I really don’t want to say this but I’m talking from experience but stressing over a laparoscopy that hasn’t even happened yet is probably making you worse (trust me, been there, done than, made myself very ill in the process!) and according to google “If a physician suspects endometriosis, a series of tests may be requested, including a pelvic exam. During this procedure, the physician manually palpates the pelvis area to search for abnormalities like cysts on the reproductive organs or scars behind the uterus. The pelvic exam does not confirm the diagnosis of endometriosis alone, and it is often not possible to feel small endometrial patches unless they’ve caused the formation of a cyst.” So please don’t panic, the most he felt was a chocolate cyst! Worrying isn’t going to help anyone, hate to say it but you could be waiting a couple of months for your lap and filling that time with nothing but worry and concern, long term will make you very very ill, so please relax for your sake and health more than anything.

As bad as this sounds, you’ve got to stand up for yourself, if your friend really doesn’t understand you have to ask yourself, is she really your friend? She will never understand how you feel, but try educating her, if she refuses to acknowledge it’s more than a little bit of bleeding there’s not much more you can do, and then you have to ask yourself if it’s really worth being around this person,

Waiting for your lap is going to be lonely and isolating but you also have to prepare yourself for the possibility nothings found, and I really hope they do find something because you really are going through hell (I also secretly really want you to prove everyone wrong!) I didn’t prepare myself and it was an absolute shock, I felt like a fraud and it was horrific, I’m now basically in a similar situation to you and fighting to see an endo specialist on the nhs, you will get through this and will come out on the other side stronger, it won’t be easy, but when you get your diagnosis all the pain and misery will be 100% worth it, and remember everyone on here is backing you so even if you do feel alone, you’ve always got all the ladies on here going through something similar xx

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Thank you so much. Yeah I’ve had all the tests and scans done but the ultrasound came back clear and the pelvic exams are extremely painful, to the point I’m crying.

I’m so glad I have this forum though otherwise I would be truly alone in all this as my parents aren’t very supportive or understanding either. They don’t listen to me and stuff like that.

Also every time I mention hospital etc to my boyfriend he always starts worrying and I don’t want him worrying again plus I never know how to explain things because he may get uncomfortable haha xxx

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