Feeling lost and hopeless. Bowel endo. Doctors won't listen. Any tips?

[Amywoodx]

Hey all, I'm currently on the contraceptive patch with suspected endometriosis on my bowel. I am on my patch free week which induced a period and every day I wake up with excruciating pelvic pain and bowel pain and a new symptom; pain when urinating. I really hope this is just because I am on my period and it will be okay again when I put my patch back on. I did not have it this bad a week ago. I have to go toilet to empty my bowels about 3 times before the pain eventually subsides. It's not a great start to my day at all.

Before taking my patch off this week, I was on it for about 6 weeks with no break and I felt okay, I'd say 6/10, a lot better than I had been previously & a lot better than I am now. I was managing to eat normal foods that everyone else was eating like pizza, coffee, tea... I felt normal to say the least.

Currently I'm feeling so tired and depressed. This tends to happen during my periods but just getting worse and worse. Nobody actually understands how much pain I am in because physically I look okay. It upsets me that people will have to see me bed-ridden to understand how much this is affecting me. I have nobody to talk to except my mum but even she is getting fed up of me constantly talking about it and thinking the worst, so I don't say anything anymore because she just gets angry.

I've been to see 1 gastroenterologist, 3 different gynaecologists and 1 specialist endometriosis surgeon who I've agreed to have a laproscopy done by in the future via the NHS but people are now telling me that it's better to go private as the experiences are different... is this true? He thinks I don't have endo and neither does anyone else, except my gastroenterologist. I had scans which showed nothing except polycystic ovaries so they all think that I don't have endo, but as we all know on here scans don't show anything. It's so frustrating that an endometriosis specialist is trying to tell me that there's only a 20% chance I have it just because it wasn't picked up on an ultrasound!!?? I had so much hope before seeing this surgeon as he is highly recommended, has saved peoples organs and is very skilled but now I am even feeling like he is not good enough and that he only takes patients with severe endo seriously.

I keep reading so many negative stories on here which also doesn't help and keep thinking the worst about my future surgery as I feel like he's only going to do the surgery to sort of get me out of the way. It makes me wonder, even if he does find endometriosis, will he even get rid of it properly or be fully prepared?

Nobody will understand how clearly my symptoms point out to endometriosis. I know deep down I have endometriosis, everything adds up. But nobody will listen and the waiting list for surgery is 6 months away. I'm so confused, so many people say that after excision surgery they didn't even feel any better, in fact, some say they felt worse. I know everyone is different but I don't even know if it is worth risking it.

It's having a huge impact on my life and it is so overwhelming too, especially when I was literally fine this time last year. Everything has happened so suddenly and out of the blue. I'm supposed to be finishing my degree next year and doing exams in a month and I can't focus on anything except endometriosis. In fact every time I open my laptop to study I end up on endometriosis websites. Also experiencing brain fog, does anybody know why this happens? I also don't want to take a gap year because 1) I am already very behind with my studies 2) that just means this stupid endo has beat me 3) I know that this will make me feel ten times worse (which I didn't think would be possible). Being at uni sort of helps take my mind off things and being around friends too, but it is so hard when it hurts to even get out of bed. I also can't stop thinking about the future and what is to come. Another thing is that my parents won't be around forever to support me when my endometriosis inevitably returns and I hate the thought of that.

Any tips on how to stay positive, you guys got any positive stories? What should I do? I really feel like there is no hope.

[Afrohair]

Firstly you really must find another endometriosis specialist if you don’t feel comfortable with the one you have the thing is they don’t know until you have a lap my specialist was almost sure mine is not that bad but did admit until you get in their you just don’t know it can’t be seen on scans only the naked eye.

You know your own body I can’t stress that enough if you think you have endo you should treat it in a way that you wish I don’t push for laps especially if your not fussed on having children but you can treat it with diet and even hormones if it makes you feel better you don’t have to have a lap

Admittedly some people are worse after a lap .the only difference with private is you will get seen quick and listened to more

I was like you this time last year I was starting a new life literally thought I was really going to turn my life around I had a baby and lost it at 12.5 week I got engaged to be married right before endo struck me probably about two week and now my wedding hasent even been planned

You also sound very very anxious and depressed in this post perhaps you could come to terms with the illness in some way I’ve not had a formal diagnosis other than a letter from a private specialist but that’s enough for me I have this disease and I have to accept it and do my best of life whilst I can and for my children as I said earlier you know your own body so perhaps you’ve spoke to the wrong specialist x

[Amywoodx in reply to Afrohair]

Firstly I'm so sorry to hear about your miscarriage. You've been through a lot.

I'm comfortable and confident with the fact that I believe if he finds the endo then he will do a good job of excising it, looking for more etc. However what bothers me is that he said he doesn't think I have it just because of what scans have shown and the fact that it happened very suddenly. So it's difficult because yes there may be other specialists who think I have it, but will they do a good job with the actual procedure? The surgeon I went to has been known for excising really well so that's why I picked him but it's all very confusing. Just don't know what the right thing to do is and that's the worst part about it all.

If you don't mind me asking, what symptoms do you have and how do you treat it? Does it affect your daily life significantly? x

[Afrohair in reply to Amywoodx]

Yes it does most days I have awful pelvic pain it’s worse on my periods and I bleed out my bowl on my period.nausea ,fatigue ,painful sex .i just think his logic is stupid did you have the scan with him?he may think an endo specialist did it.my symptoms were sudden too then did not stop every month

[Afrohair in reply to Afrohair]

I was actually at home decorating when I felt this sudden bloating in my womb then all of a sudden I couldn’t walk and was limping on one leg this calmed down then carried on period after period and it got worse I know I have endo as when I lost my baby just before the loss my symptoms went and they say pregnancy cures it which is obviously not true it’s only temporary whilst your pregnant if at all x

[Amywoodx in reply to Afrohair]

Oh that’s awful so sorry have you tried the pill? Or even the patch?

An endo specialist did carry out my scan and when I told him who it was he already knew of him so I think that’s why he said usually he could pick it up on a scan but even so, that was a long time ago and it’s worsened since then.

[Afrohair in reply to Amywoodx]

Oh sorry about that the pill Dosent work for me it only made my symptoms worse so I was advised to come off it I’m not really supposed to have it anyway really but I trialled it’s as last time I had it I got a breast lump, but some gynaecologist don’t care they just want to fob you off don’t even look at your history the one I had never looked at my past history! or even my pain diary !

[Amywoodx in reply to Afrohair]

Some gynaecologists really don’t listen at all it’s so frustrating, I really hope you find something that can help you soon because it’s horrible living with this. How long have you had symptoms for?

[Afrohair in reply to Amywoodx]

I’ve had symptoms almost a year now but I think I may have had it longer than that as they say it takes 3 year for symptoms to show and I was noticing little things like change in period pain and blood loss before that but I didn’t know anything about endometriosis so I would have just disregarded that then it was only when I was scrolling a website called netmums I kept passing it and wondered what it is and saw loads of girls saying how they have this condition and they have bad periods and trying for a baby and it clicked that I have it!i immediately went back to my g.p as they thought I had a cyst but the cyst went and the pain kept coming I kept researching this condition! I told my g.p I think it’s endometriosis she told me to tell the gynaecologist who didn’t listen he said he might treat it if I did but I said might is not enough I need it treated !so I went to the g.p again and asked to be referred to an endometriosis specialist I’m now waiting for the referral to go through I’ve already waited nearly 3 week I’m hoping it gets accepted and I get a lap done. I also saw a private specialist who said he could feel endo internally so I’m waiting for a referral to him

[Afrohair in reply to Amywoodx]

Listening to your posts I would think a lap would be the best option for you despite what he says the reason I say this is you sound almost certain you have endo and you know your own body so you will get the answer you need I would go down the nhs route incase they don’t find it and can refer you to the relevant department of what’s causing your symptoms I hope this helps x

[Lepetitellie]

I am so sorry you are having such a hard time. I have an ovary meshed to my bowel and so I also experience bowel pain and movement problems when I’m due on and on my period. I also, before my surgery, was getting pain on urinating. You’re not going crazy! Agree with Afrohair...if you’re not confident ask to see a different specialist if you’re not happy with your one presently - you are allowed to and it’s your right. Don’t take no for an answer...this is your body and life and you can totally handle this. I had a laproscopy to get diagnosed and guess what it helps just knowing that you have a name for what’s going on but also you’ll need that diagnosis to access further treatment down the line which you may need. Yes, of course, probate is better all round, but on both occasions I have I’ve still ended up with the same surgeon I would have had on the NHS. Finding the specialist that you can trust is key...women i still think make the best specialists in this area. The pain will ebb and flow. I was diagnosed with a lap at 20. Afterwards I managed my condition as was only painful during period but then 20 years later I’ve just had to have an ovary, tube removed and lots of getting rid of adhesions. Guess what? Positive experience and again much better. You will learn to adapt and live with this - I promise you. It’s a pain (literally 😏) but you can do this. But firstly you need to get that diagnosis then you’ll be in a better position to know what next steps to take. Just my opinion but you’re going to be okay. You are.

[Amywoodx in reply to Lepetitellie]

Thank you so much for your reply, I'm so sorry you had to go through that at 20. It really makes things easier hearing more positive experiences and just simply being told I'm going to be okay really makes all the difference sometimes. If you don't mind me asking, were you fine after your first laproscopy and were you on any birth control to help slow the regrowth? x

[Lepetitellie in reply to Amywoodx]

I tried pill for a while but it didn’t suit me. Like I said the pain was and still is manageable with codeine during periods. The laparoscopy didn’t stop or alter the pain in any way. My latest surgeon said that she’d had quite good results with the marina coil (probably spelt wrong) but then on the other hand she told me that she’d just had to do a full hysterectomy on an 18 year old because her endo was so bad. I think the trick is just to try things out and find the thing that works for you. Less sugar definately helps but I couldn’t keep that up...what life without cake?

[Amywoodx in reply to Lepetitellie]

Good that’s it’s manageable at least and hahaa for sure, worst part is that I may have to alter my diet and I can’t stay away from sugary foods at all!