Feeling alone - like people just don't understand

Hey lady's

I really need someone to talk to I have had endo for a while and as it continues to get worst I am struggling more and more it just feels like most people don't understand how chronic it is and how much it can make your tried and get you down I feel so low at times and because the pain and bloating I don't feel confident and my boyfriend while I think he try's just doesn't understand and I'm pushing him away because I'm. Just to scared to be romantic in that way because I know how much it will hurt and I'm struggling with work, working long hours that I just can't seem to handle and more stress is cause more pain but because my manager friend has endo mine can't be that bad and I should just get on with seems to be there attitude- I know this may sound bad but I just feel so alone like people who don't have it just don't understand how bad it is - my male manager thinks I'm just being dramatic and it's just like have a period and that makes me scared to speak out about how much I am struggling

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  • Hugs for your pain. I empathize with all these feelings. It's a very isolating condition.

    I've had chronic fatigue for a year and had to reduce my hours in February. Ive not had sex with my hubby in months and have lost 4 cm of my vagina which has had to be repaired. I am very bloated post op and been buying new clothes to try to hide the pregnant bump look. Reducing dairy and gluten help a bit with bloating.

    I explained the mechanics of the disease ie a benign tumor nodule which gets inflamed, grows scar tissue and causes anatomical distortion, and the surgery I was needing which seemed to help my work understand a bit better and they have been really good since. Perhaps share some info material most good sites emphasize that pain level and severity of the disease vary greatly by individual and it's absolutely not just a bit of period pain. You could ask to get occupational health involved who are a neutral party.

  • Thank you so much , I cannot explain how much I appreciate your reply it so nice to have found some where there are nice people who understand how I feel , hugs for your pain and again thank you so much for your help it's nice to not feel so alone x

  • You're never alone here , and we all often experience the same feelings as you. Do seek more help if you are struggling so much, both for your Endo pain and emotionally perhaps through a period of counseling? A lot of GP centres now offer stints as a mental health service so might be able to help.

    Look after you and do speak out and get help from the people around you. Don't suffer in silence X X X X

  • Thank you so much , take care of you x

  • It's hard not feeling like you're the only one who is going through something as terrible as dealing with endometriosis. It's hard for me to be intimate with my fiancé but he completely understands although I feel terrible about it. Sometimes we have to trust that our significant other is more concerned of our wellbeing than concerned with sex. It isn't easy.

    Everyone's endometriosis is different and it affects everyone differently. No two people are the same so them making that comparison isn't fair.

    Do your best to voice your concerns. We are here to support you x

  • Hey , thank you so much and your right he probably is I just feel so guilty sometime if that make sense , thank you for your kind words and support , I have never done anything like this before and I am really glad I did because it really is making all the difference emotionally , thank you again and take of you x

  • I know it's hard. These forums help a lot. They helped me through my first laparoscopy. It's a great resource.

    I'm here if you ever need to chat, my inbox is always open 🖤

  • Thank you so much your very kind :) and same to you x

  • As Starry says endo is a very isolating condition. The pain and the fatigue make it very hard to continue life as normal and I think often we put all our energy into trying to remain employed and keep day to day life going that other aspects of our lives go out of the window. My social life has suffered as I put all my energy into remaining in work despite the debilitating fatigue. It's very hard, but keep posting on here as so many of us are in the same boat.

    Gx

  • I completely agree I feel like I don't see anyone any more because work it hard enough that I just dot. Have a social life I feel I have lost friends because they think it's just excuses. Thank you for your kind words and support ! I'm so glad this place exists- take care of you x

  • My heart goes out to you, no one close to me has endo and I find even when you explain it is difficult for people to understand. I spend 12 years on different birth control to help which It didn't. Recently I went to the doctors and prescribed me mefenamic acid it has changed my life. I had my laparoscopy yesterday as well to have some removed. Try researching different positions there are some that are out of the question but some work for everyone if you get what I mean - bit difficult to divulge on a public platform, my fiance took a while to understand it and now we have ways that work for both of us. Your doing great! Don't let anyone tell you otherwise. I talk about my condition often, before long people either have to listen or they leave you to do your thing and they have stop asking questions. Best of luck and hope this helps a little xx

  • Aww thank you, I am going to the doctors today for a change on birth control as the last one never worked how are you getting on with the medenamic acid well ? And thank you for your advice I am same no one I know has it and they just don't seem to understand just how bad it is and how you get pains everywhere legs are the worst , I hope you feeling better after the op thank you for your kind words and take care of you x

  • Thank you it's a difficult journey and it doesn't help when people think it's 'just a bad period' I'm not on birth control anymore so I don't know if they would prescribe mefenamic acid but my periods have went from 7-10 days really heavy to 4-5 days very light, first day I get mild pain not like the doubled over can't move hot sweats crying pain I usually have and then I have 0 pain the rest of the time. I can still feel a nipping pain in my left side, I cried when I started taking it because it's the first time I realised that is how normal periods should be. I went to the doctors originally to get stronger painkillers than the 500mg I was taking and she's was like I'm going to give you these hormone tablets I was like I NEED PAIN KILLERS. I swear by it now! :) best of luck :) x

  • Thank you so much I hope yours gets easier , and I'm glad you found something that work I may discuss it with my gp, take care of you xx

  • I'm sorry that you're struggling so much, I'm in the same position regarding feeling alone. As much as I have good friends that I can talk to the majority of people in my life just don't understand or take into consideration that I'm usually super tired & always sore in one way of another, I think it's just easier for them to not think about it so they don't have to bother. I haven't worked for a long time for a number of reasons but this last year with endo & lack of anything or anyone really helping with it, has been the worst period of my life. I'm at the point where I feel so alone & pointless & so just go through the motions of life although these last fews I've struggled to get out of bed even worse than I normally do. I've found having endo is so debilitating in so many ways but in particular when trying to start dating, I put it on all my dating profiles so people know what to expect etc. I really just wanna find someone to spend time with & see how it goes but people seem to expect sex & therein lies my issue cause I just couldn't stomach that right now. Apologies for my ramble, just needed to get that off my chest.

  • Don't apologise I completely feel where your coming from, work is a struggle everyday and I hardly see my friends because as much as I'm sure they try they just don't seem to understand this is an all the time thing not just a couple of months things , dont feel alone my inbox is alway open if you need a chat or a rant :) this is definitely one of the hardest things I have ever been though but together we can all fight through it we are all strong women :) take care and hope things get better x

  • You poor girl! Please know that you are not alone in your pain a suffering. I too had severe ends and adhesions with multiple surgeries. The pain generally is back within 3-6 months or less. Try and source out other treatments besides surgery because it only adds to the problems.

    Stress is like fertilizer for endo as it increases the estrogen and thus the endo. Can you take the Birth Control Pill?

    I talked my OB into leaving me on the pill without stopping for years and it helped. This was back in the 1990's before they were exploring this aulternative.

    Perhaps find a job that brings more joy then stress.

    Blessings of Hope

  • Thank you for your advice I have got the pill so I am hoping that will work as I do not want to have surgery again , stress is something I need to avoid so I think I need to explain to work in detail and hope they understand thank you and take care of you xx

  • If you ever need someone to talk to please add me on Facebook ! I feel exactly what you are feeling but do feel a lot better after the op! I still get twinges some days but I know what it's like to not be taken seriously etc xxx

  • Thank you so much so nice to have support of people who really understand xx

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