Feeling guilty

[Carrfield]

Hi guys, I’ve been reading all your posts and can’t help but feel a little guilty. I was only diagnosed in October and even tho I do get a lot of pain its certainly not as bad as some of you have described. They won’t send me for the opp unless it gets really bad due to the fact that I can’t take the pill that calms the symptoms.

They told me it’s possibly the reason it took me and my husband 4 years to have our 1st child. We went through agony trying to conceive and had multiple miscarriages and a “failed pregnancy” but thankfully we now have a boy who is 3 1/2 and a little girl who’s 2. We have considered possibly having a 3rd.

I have suffered from depression and anxiety since a very young age and was wondering if there was anyone here who has been through anything similar who has any advice or who would just like a chat. I’m a very open person who’s a little lost as to who to talk to as my husband “ as much as I love him” doesn’t quite understand what I’m going through.

[weekari]

Hey, sorry to hear that you're feeling guilty. There's no pecking order in terms of having a right to feel crap about having endo or a level of pain that justifies you having issues with it. Even if all it did was give you spots once a month, it's still a disease that is a pain! We all have our own human struggle and probably for everyone, having endo is just one part of the picture. It sounds like you're having a a bit of a crappy time just now.

I've had health issues for 4 years but was only diagnosed with stage 4 endo on Fri. It was a total shock as I wasn't being tested for that and had endo ruled out 2 years ago after a laporoscopy. I've been feeling totally lost since the diagnosis. I don't have many friends, to be honest, I don't really feel I have one real friend. I've a couple of new friends who aren't really at the 'be supportive' stage and I've one older friend who's just never there for me and seems to be distancing herself from me. My husband had been rubbish since the diagnosis. (omg I feel I sound like a total looser!) He's just thrown himself into work and really hasn't been there for me. He just doesn't cope well with stress or emotions. It's crap that your husband doesn't get it. I think sometimes it's like if they can't 'fix it' they just don't know what to do and, for me anyway, all I need is a big hug and to feel like he's there for me.

I came on this site to try get some answers and it's really helped to feel connected to people. I am desperate to find people to talk to and feel less cut off. I'd love to chat! 😀

Do you know about the endometriosis support groups? I was thinking of going to my local one. I've only just found out about it but there's info on the endometriosis UK website. I don't really want to feel defined by endometriosis but if I get to meet some nice new people out of it, then at least it's brought me something more than having messed up, sticky insides! 😂

[Carrfield in reply to weekari]

Bless your heart, my hubbie understands some of it until “his needs” comes into play. I’ll always be happy for a chat if you want to have a gd rant 😁 it’s healthy to have a gd moan now and then so fire away whenever you feel the need lol x

[princessk09]

Endometriosis isn’t like a textbook condition, we all have different symptoms and get pain at different times. Some have pain 24/7 others just get pain on their period and ovulation.

I have severe pain during my period and ovulation but rest of the month it’s bearable. If you ever wanna chat, just PM me as I’m always looking for someone to talk to and get advice etc. I’ve suffered from depression and have times where it creeps back again. Xx

[Carrfield in reply to princessk09]

Yeah that’s how I am. It can be quite frustrating at times x

[Rai78]

Hi, please don't feel guilty, it sounds like you have other things to deal with which are just as problematic.

I guess I’ll give you a condensed story of my journey so far. I started getting pain in April 2017. Mild at first but constant. It took three trips to the GP over six weeks for me to be taken seriously. I got sent for an internal scan which didn't really show anything, so I was referred to Gynae. Before I saw anybody, I ended up in A&E with severe pain and on oral morphine; twice! I received a laparoscopy in February and the improvement is phenomenal. I feel extremely lucky that I was diagnosed and treated so quickly, especially when I read some of the history’s on here, although I feel like I lost 5 months of my life as I was pretty much crippled the whole time.

I’ve suffered from depression since I was 17 and have been on medication for over 20 years. The contraceptive injection made me suicidal and the mini pill made me have paranoid delusions. I now have a red flag on my doctor’s notes that says I have a severely bad reaction to hormone treatment.

Anyway, after my laparoscopy I was terrified of the pain coming back but I was equally terrified of hormonal treatments. I decided to get the mirena coil fitted as my gynaecologist said the hormones that are released are in much smaller doses and more localised. It was pretty much a last resort for me. I’ve had it for about four weeks now and so far so good. Would this be an option for you until you’re ready to try for your third child?

I’m extremely surprised they won’t operate because you can’t take the pill since there are other options (such as the coil); could you maybe talk to your specialist about them? I’d also recommend keeping an eye on your pain levels; as I said I went from mild constant pain to needing to go to A&E in six months. (I really hope it doesn’t get to that stage for you but I have heard of women not receiving treatment until they end up in hospital).

I’m not sure if any of this is helpful but I just wanted you to know that you definitely shouldn’t be feeling guilty; everybody’s endo journey is different and you suffering more (or feeling guilty because you’re not) isn’t going to make it any easier for anyone else. Sometimes it can give hope to people who are new to all this.

All the best.

[Carrfield]

Hi thanks for the advice and info. I’ve had the coil in since I had my last child 2 years ago with no problems thankfully so you should be ok fingers crossed 🤞🏻

[Jaas1]

I understand what u mean as i too experience pain but not to the extent as others on here and sometimes i feel like i should get over it and stop feeling sorry for myself or if its all in my head but it obviously isnt. I recently got married and live with my in laws who are terrible. They have put me under so much stress and agrivated my symtoms i lost 1 stone in 1 month and was in so much pain i hate them for what they have done to my body. 9 months down the line im still here and still in this bad situation with them but im moving out with my husband next week (if nobody stops us like last time) but im glad ny husband is supportive and understanding and has seen what ive been through and still am but he too wont ever know 100%. I dont havr many friends just 2 who live an hour from me and even then i wouldn't consider close. I go through phases of upset, anger, lost, lonely etc and cant remember the last time i genuinely laughed. Its important to talk and because im home everyday on my own or with my husbands mum who makes my life hell i feel even worse and the need to talk is even more so now. Sorry don't want to make it about me just saying you're not alone just in a long winded way! X

[Carrfield in reply to Jaas1]

Thank you for being so honest and open with me. I’m relieved that you husband is supportive especially with how his parents are treating you. I hope your move goes well as it will give you both a fresh start and your own space to relax. Don’t ever apologise for saying what has obviously weighed you down for so long, if you ever need to chat or to just get something off your mind please do as it will help to relieve any stress you have. I like a good moan myself lol. Again thank you for your message and I hope the move goes smoothly x