Hey Team, first post here and i didn't know where else to vent this.
Does anyone else just feel angry? Like pissed off all the time. I'm so so so sick of it, sick of everything, sick of talking about Endo, sick of being in pain, sick of being looked after, sick of feeling vulnerable.
I'm starting prostrap next week to see if the more recent severe pain in my bowel is my endo or something else, because if it is Endo, then im 'stage 4' and the scar tissue is now in my bowel. My gyne guy (lovely) says that he needs informed consent because the likelihood is that they're going to take my ovaries, my tubes and a portion of my bowel.
Im 25. I've always said that i don't want children, and i guess it holds true, i still don't - i think. But it feels like an option has been taken away from me. Which is really fucking my head up. But i cant say to anyone how much its bringing me down because ive always been that "i don't want kids anyway" (happy smiley upbeat girl)
I'm feeling so fucking depressed about being depressed and im just so bored with pain and people feeling sorry for me. And then when i make a conscious effort to be more upbeat its like barbed wire is pulled through my damn insides that actually takes my breath away and then I cry. And im sick of crying!
This is ruining my relationship (OK I am ruining my relationship by being an angry moany cow).
And the most bizarre thing is. I am STILL made to feel like im making it all up. Up until the point where i feel like a crazy person thinking 'Am i making this up? is this pain normal? I know ive been diagnosed but im probably playing it up a little' And then when im on, my NEW BF of 6 MONTHS has to hold my hand when i empty my bowels because the pain sometimes makes me lose consciousness and we both want to see where this new relationship will end up. Not with my head cracked open on the sink...
Sorry for shouting into the void here, i don't really know what this will accomplish, but i'm pretty sure everyone i know is sick of me talking about it. I'm sick of talking about it.
But here it is, ever present, ever painful.
And... breathe.
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Emoly14
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Having here to vent to people who understand is very important-bottling it up definitely makes it worse. It’s good that you have a nice ‘gyne guy’ (I may use that one!) but you should definitely tell him that you’re worried one day you could change your mind about having children, they may be able to somehow help.
Also, if the BF of only 6 months will sit and hold your hand when you’re going through that, he’s a keeper! 💛
Hey, thanks for your comment, I agree he’s a keeper but I’m just pushing him away and being an angry shit because I don’t want to drag him down or make his life shit. But then again I know he’s a grown up who can make his own decisions. But still, I’m an irritable angry little ginger who went a bit mental and shaved her head. I’ve done a 2007 Britney.
Completely understand all of this. You are certainly not alone. I’m so so angry and sick of it was literally just about to write a post venting too! I’m 27, got diagnosed at 19, too late but always is!
I hate my life, this new life where you have to lower your own expectations of what you can do. Tried to be a normal healthy person this week, went to the gym three times, tried not to sleep in the day, tried to work my part time job. Last night nearly fainted eating my dinner and had to go to bed where I slept for 13 hours straight.
I hear you I’m getting a bit pissed of with it too !!
I was diagnosed last November with laparoscopy and they said they couldn’t do anything with it because it was to bad and now I’m waiting for another op
I have stage 4 I’m 31 want kids and in a long term relationship it’s awful I’ve been running my own slain for 3 years now whilst suffering in silence
I’ve been to a n e countless times doubled over can’t move and they think I’m making it up ..
I felt every single word of that, all sounds so familiar! Everything you are feeling is completely valid and I feel the same way. Just know you're not alone, there are people who understand (hi) and you will have better days. Thinking of you, agreeing with you and wishing you all the best xxxx
I could’ve written this, but exchange the bowel for hip pain, and the holding hand pooping to having him console you as you ugly shower cry.
But seriously he sounds like he’s letting you lean on him a lot, accept the help and talk to him about it. Anyone that’ll do that at 6 months in must be committed! Talking to someone helps more than anything. Try support groups in your area too if you don’t want to chew your partners ear off.
But I’m with you, sick of crying for one reason or the next. I’ve exhausted my supply of tears and work myself out.
I am crying just reading this, I completely understand how you feel!! I currently have been on my period for 11 days, am in lots of pain and still bleeding heavily. I don’t even have an official diagnosis yet😭
I totally get how you feel. All I can say is be kind to yourself. Take time out when you need to. There will be days when you feel like you can conquer the world, and there will be days when you feel like you can’t move from your bed. Make the best of the good days, but allow yourself the bad days!
Keep fighting and keep smiling☺️
A thousand times yes!
I first went to the GP over 10years ago and was told it was IBS. I’ve argued with every GP since that it’s more than IBS (no IBS treatment helped, no food was identified as triggers - and I cut out everything and slowly reintroduced stuff), but was told everything I was experiencing was normal. I came across endometriosis in a google search about a year ago - no GP had ever mentioned anything about it to me, despite reporting several issues with my period/cycle and multiple miscarriages/problems conceiving. Current GP agrees (after I suggested it) that it’s likely that and has I’ve had pretty much every hormone contraceptive and had issues in them all she sent me to Gyny.
There are days I can’t walk, and other days I’ll suddenly double over in pain (not helpful when it happens mid meeting). But the gyny didn’t want to know any of that. All she cared about was the bleeding (bleeding through is the least of my worries) and going to the toilet. “Do you have trouble opening your bowels?” “Yes: there are days when it hurts too much to try and other days where I’ll sit there in floods of tears because the build up has gotten to much but it hurts too much to try and push. It’s worse when on my period” “well that’s not unusual” - before shoving a speculum up me with barely a warning
It’s the sheer dismissiveness of it all - completely speaking over the top of me, not letting me explain my experience, suggesting the same things me and my GP have already discussed and suggesting I take the medication (mef acid) that i am already on before finishing with: “ok, we will do the diagnostic laparoscopy but it won’t solve anything if you aren’t willing to take hormones and if we don’t find anything, then you’re no better off - unless we damage your bladder or other organs, because I’ve seen that happen and then you’ll be worse off”
And to top it off - although mostly amazing - when I told my partner that my mood had been up and down yesterday (gyny appointment was the day before) because I’m so frustrated with it all, his response was to ask if I’d taken my medication (meaning my antidepressant). He has been amazing through this, but to conflate my frustration, anger and upset with not taken antidepressants properly really fucked me off(although I know that’s not what he was doing - it just felt like I was being dismissed again)
Fuck the patriarchy. It’s their fault that the whole process is a nightmare for women with pelvic pain and endometriosis. If men experienced this throughout their reproductive life, there would have been a cure for it a long time ago!
You poor lovely, bloody rough isn't it!! Agree with so much of what's been said by you and others and good on you for getting it out there- as not only hopefully do you feel a bit better and not so isolated, but it mjght also encourage others to do the same and reach out for a vent to a space such as this that can be so supportive. Just a quick thought to share - re prostap- I was put on it as a determiner to see whether it was estrogen causing the issues and a first step before they'd consider a lap, after initially too being in the 'its definitely IBS' gang!! (found out from elsewhere afterwards that they shouldn't really do this - only use as treatment of pain reduction once Endo has been identified). It was a bit of nightmare and I really suffered with the side effects and using the HRT just brought back the original symptoms - without the HRT it did definitely reduce the 2/3 weeks of period cramping and as the periods stopped there was no excruciating pain at those times. BUT, it didn't stop the bowel issues themselves, pain before bowel movements at when I would normally be ovulating and pre getting my period, nor the bloating etc. But when I had my lap some was on my bowel and in my Pouch of Douglas (as well as both ureters and both pelvic walls) so thought I should share with you that the prostap may not stop the bowel symptoms but does not mean it's not endo round there causing the issues. Hope that makes sense and I've understood what your gynae guy was saying x
Ah shit. Thats so risky for me then. If im on it and im still in pain, but reduced pain shall i say that im not in pain so i get the surgery? Or tell the truth if im still in pain, but then start at the beginning with trying to find out why there's pain in my bowels. Im getting quite scared about this surgery and the after effects are making me feel dead nervous.
Totally understandable to feel all the things you are feeling, it does suck but hopefully you can get the right help to get on the right path. Have you read the NICE guidelines for Endo (Sept 2017) ? Easily googleable and it was these that eventually helped me. They state that at the least women with suspected or confirmed mild Endo, stage 1 & 2, should only be seen by a gynae with specialist interest in Endo and not a general gynae, or those with other interests not including Endo. Women with suspected or confirmed complex or deep and infiltrating Endo ( so I'm guessing, though cing quote me on specifics, above stage 2) or those with lower stages but that are not responding to treatment given in general gynae departments must be referred through to a BSGE specialist centre. It seems from what I've been reading and my own experience that it's really important to be being seen by the right people.
I wondered about what I told them about the pain too to begin with - but then I realised that as nice / understanding as I thought the gynae was (after being completely invalidated by the first) he told me things that weren't very accurate at all. After being wrongly discharged by the head consultant after a clear Transvaginal Ultrasound scan I ended up taking matters into my own hands and finding my own specialist. I'm not suggesting at all you need to do this as there are very clear guidelines through NICE laid down for getting access to the right level of experience (bit more complicated for me as live in Wales and funding arrangements seemed to cause them an issue initially) Since discharge I've now been told I could be referred through to a specialist centre (I'd already gone private as I got desperate but am being referred for follow up) It's really important you are seen and treated by the right people for your circumstances as there are so many stories out there of women being treated inappropriately and being advised wrongly or undergoing surgery without the right level of expertise being on the case, so things might be missed. Sorry if this seems to complicate matters and I don't want to worry you further but I just feel strongly after my piss poor experience that I want to help where I can so women get the right help x
My non specialist gynae kind of posed that to me - that he would prefer to treat it as if it was Endo before knowing if it was or not because a lap can cause issues in itself and he would be giving me the same treatment etc. But since then I've read / talked more to people that weren't diagnosed treated correctly first time round and the Endo progessed since caused damage to bowels etc. Left untreated it's not good from what I understand as can infiltrate organs causing damage and complications. And if removed correctly and then managed people can experience reduced symptoms, though not always granted. But stopping things getting worse is important. And being treated by the right people. I know it's a bugger and can be scary. 3 weeks post op after having it cut out I'm going ok 👍
I know how you feel. After 6 years of going to the GP, they are only now referring me to gynae. They’ve expedited my referral because for 15 days straight I have been in agony (only 5 of those days have involved my period since I’m on the pill) I’ve had my boss talk to me as I had to have last week off completely and she has implied that another absence could mean I lose my job. I’m only 19 years old and I’m scared shitless about the fact I could have endo. Everyone thinks I’m making the pain up, that it cannot be so bad I feel lightheaded or sick or feel I can barely sit or stand.
But, this forum is amazing to talk to other women in the same boat. We all support each other here. If ever you need to vent, need support, WHATEVER, write a post and we aere all here for each other. Much love to you 💜💜
If you have been off with the same condition they can’t sack you. This is covered under the equality act used to be the disability act. Especially if you are seeking help and waiting for tests. I mentioned this to another person on here as she was being threatened by her bosses as well. It’s an ongoing condition. What I would strongly recommend is joining your work place union. It’s a small fee every month and they can support you, give you advice and attend meetings with you. They also cover lawyers fees if it did develop to a court case for unfair dismissal. Think you have to be with them a month before they can work on your behalf. Check with them when you enquire. The workplace law means your boss has to recognise you are in a union and allow them to attend meetings with you etc. Please let me know how you get on. Xx
Thank you for your reply! I’ve had an occupational health referral where that doctor wrote in his report that it is expected for me to need time off with suspected endo because of its symptoms. I’m not 100% what my workplace union is so i will have to have a look - I work as part of the NHS so you’d think I’d have a bit more support 🙄 Instead, I just get the comments of dragging my team behind when I’m not here (I’m main point of call for the office as an apprentice) but there is very little that only I do. I understand that it is difficult without certain members of the team but when I can’t focus beyond the pain and everything it bringd, I’m much more of a detriment. Last week, I had to go home early because I felt so bad and my boss claimed that as she didn’t want me to have an absence, she’s say it was my NVQ study time which was a waste because obviously I didn’t do it. I took my study time as normal anyway since she wasn’t here but I hate that whilst my body feels like it is giving up on me, others are doing the same. (Sorry, this is a lot of word vomit) xx
I have lots of friends who work for the Nhs in all different aspects, the common thread is how unsupportive they are when you are poorly. They should not be making you feel guilty for being off. My work treated me completely differently as soon as they found out I was in the union and had support and backing. What is important is that you join a union that is recognised by your work. I googled my employer and who the recommended union was. I’m with USDAW They have supported me many times now and knew about laws and regulations that my work were not aware of. Especially the equality act. If I am off multiple times due to my endometriosis then they can’t discipline me as it is an ongoing condition. I think you manager should have discussed with you about your study time before making a decision to put it through that way.
I think my boss if just annoyed by my time off. I had to have a week off in November and have had little days in between where I’ve been too ill to come in. I’ve told her it is something that links all together but it’s like it is going in one ear and out the other. I’m going to have a look if there is a union for my specific Trust within the NHS and see if they can offer support. I hate being in work when I’m in a lot of pain and feeling awful, yet feel like I’m forced to come in so I don’t lose my job. The words haven’t been said but you can tell when someone is implying it xx
Honestly think you will feel so much better when you have support of a union. When your in constant pain fighting for yourself can be exhausting. They will sit in on meetings and give you all the advice that you need. Good luck x
I found reading your post hard. Mainly because your description of everything is very close to my journey. Especially the doubt, anger and pain. Are you imagining this? No unfortunately it’s very real. The reply’s you have had so far are brilliant. I hope they have given you some support to keep fighting this horrible endo battle. I knew from probably the age of 19 (im 48 now. A very young 48 I like to think) that something was seriously wrong. Kept being fobbed off that it was IBS even though it was in line with my ovulation and no meds helped. Like you I wasn’t keen to have children. But then I met my husband when I was 32. We married when I was 35 and decided we wanted to try for a family. We lied as we knew my age would be against us, he’s 4 years younger. And said we had already been trying for a year. We then had a six year ivf journey that wasn’t successful and I was told later would never have worked. I had a laparoscopy then and that’s when I was properly diagnosed. A bit cruelly even if I say so myself. Still drowsy from the anaesthetic and the consultant told me “I was riddled with endometriosis and how did I expect to get pregnant” well matey I didn’t bloody know cause no one would listen to me. Even after that I was still fobbed off that my pain was IBS for years. We moved from Scotland to England and I was referred to an amazing gynaecologist. Straight away he knew that my ovary was attached to my bladder. I cried. Mainly from relief that someone finally believed me. He fast tracked me for urgent surgery. He did a brilliant job separating all the organs that were attached. My bowel, bladder, ovaries, stomach and vagina plus a couple of cyst for good measure too. I had a year of pain free life. When like you and I you haven’t experienced this it makes you angry that everyone else is walking about pain free enjoying life. He did warn me that I would be back. Hopefully after 55 for a hysterectomy. He also fitted a coil to stop the endo from growing back. That didn’t stop it. I swear to god I have super endo that just grows and grows. After 6months I am waiting to have a hysterectomy. I was on Zoladex and HRT for the last five months. On the 28th December the pain was so bad and had been for days I considered suicide. My husband walked in on me punching my stomach cause I could deal with it anymore. The only thing that stopped me killing myself was leaving my husband in debt as insurance won’t pay out if you take your own life. Not that I would hurt him, or his family that I’m really close to. I was passed that thought, didn’t care. Just wanted the pain to stop. I woke in pain, was in pain all day and went to bed in pain. The only thing that helped ontop of very strong pain relief (oxycodiene long and short acting) and all the normal pain relief was CBD oil.
I really wish you all the best for the future there are lots of amazing people on this site. You will get support. And please do not doubt yourself. Sending love and hugs ❤️
Fucking hell. I feel you - i truly do. I want to LIVE i dont want to potter aruond and not be able to do things. I want to travel and explore and buy a barge and do it up and build a tiny house and just LIVE and do things. At the moment though i feel like im surviving and there is a stark difference between the 2.
How did you get your CBD oil?
If we drag ourselves through this muddy patch we can go play in the fields in the sun for a bit. Live for the playing! <3
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Emotionally exhausted
Coping with emotional side of diagnosis
Endo and vomiting
