No one seems to listen to me : Hi guys, not... - Endometriosis UK

Endometriosis UK

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No one seems to listen to me

Anon247
Anon247

Hi guys, not sure what I’m really going to achieve from this post but I just want some thoughts and advice on my current situation.

I’ve been to see a few gynaecologists, 1st one said endometriosis but would only put me on the pill. 2nd one saying it’s chronic pelvic pain and not endometriosis. Sent me for an MRI which came back fine but is giving me the option of a laparoscopy for my own piece of mind, but says it won’t show anything.

Symptoms wise, i get pain in my stomach when passing urine and on bowel movements. Towards the end of my pill packet I start to get worse and end up being sick. If I have a break in between, the bleeding causes Major pain to the point I can’t even get up and go to uni. I feel so run down and upset over it all because they just say it’s fine or it’s normal and I’m managing well.

Would anyone advise to just get the laparoscopy done to check and put my mind at rest? Not quite sure how it’s even been offered if they’re saying it’s unlikely to show anything.

I’m just starting to doubt myself and think maybe i need to just get on with it and it’s just me being awkward

29 Replies
oldestnewest

I would say if it’s causing this much disruption to go ahead and get the lap done since they’re offering. All of these symptoms sound horrible!! I’ve been so lucky to have a Dr that listens and makes sure I’m getting treatment that suits me.

If you don’t feel comfortable getting a lap yet though I would keep trying to find a dr that listens and takes you seriously!

Anon247
Anon247 in reply to beckymonique

Yeah I’m thinking more towards getting it done because I want to know for definite, sick of being told different things as to what the problem may be

I’m currently begging for a laparoscopy as the doctors keep telling me I’m too young for something so invasive (I’m 24 so I’m pretty sure I can make my own decisions...) it drives me mad not having confirmation so I would do it if they give you the choice, puts your mind at ease and at least then you know what you’re up against :) makes pain management a tiny bit better if you know the cause

So crazy bc I know someone who had her lap at 23! But I do think that you have to take into account all the side effects and which is the best option overall. I’m getting a coil fitted soon so that I can try to preserve fertility in the long run as my symptoms aren’t too bad at the moment:)

Anon247
Anon247 in reply to beckymonique

I’m only 19 too, I’m in two minds over just getting on with it, or actually finding out for real.

gilltin
gilltin in reply to Anon247

Hey there. You definitely shouldn't try and live with it, you don't deserve it and don't let anyone make you feel otherwise, just because of their ignorance. Even some doctors don't know a whole lot about it and hand out useless "treatments". If it's endometriosis, ignoring it can lead to further problems down the line as it's a progressive condition. I had a laparoscopy and excision surgery earlier this year and I'm still having problems. It's a long journey but one well worth going on, so you can have the quality of life you should have. I'd say go for the laparoscopy so you have some answers and can make more decisions from there. Good luck on whatever you choose to do.

I recently had a lap and I'm 23, I always had problems with my periods, then had PID twice and two years of chronic pelvic pain.

The lap showed Endo and scarring (that will likely stop me from having kids (but ya know docs love to be vague about that))

Now I've started the pill again and essentially have to stop my periods - not that I'm complaining, mine are horrendous and I never had problems with the pill.

Trust how you feel about your body, your intuition is stronger than what our current diagnostic technology can perceive.

Your poor thing I can completely relate. I was hospitalised with PID about two years ago too. It was absolute agony and the doctors sent me away saying it was heartburn at first!!!! I have had problems with my periods since I started them too, the pain is absolutely unbearable and I am off work constantly :( none of the pills agree with me so frustrating

I had the implant for a while which was fine until the PID bulldozed in and ruined the balance - I couldn't go back to the pill until after the opp and the pain was unbearable too.

Things seem to have levelled a bit, but it's only been a few weeks so that could easily change.

I feel that the effects of the PID and Endo joined forces and raised hell down there, could be similar for you?

The aim for me now is to not have a period at all, keep the hormones level so there's no growth of the Endo tissue and with any luck less pain..

I really hope they can at least make some sensible suggestions for you too, as we all can agree it's definitely not heartburn 😁

My daughter had a lap just after her 18th bday. She’s suffered since 14 and they found extensive endometriosis 😢. It took a fight to get there though. Constantly at the GP and being told she was experiencing “normal period pains” and they’ll “settle down as your hormones settle”. Good luck x

Anon247
Anon247 in reply to Ems_Jane

Ah thank you, makes me feel a little less alone. I’ve been suffering for years and was just told the same how it would settle down etc x

Ems_Jane
Ems_Jane in reply to Anon247

It’s horrible. You know your body more than the doctors. At least you’ll have an answer one way or the other. With her being young like you,she does feel quite isolated. No friends understand x

Only way to know is laparoscopy. MRI can be normal even if you have endometriosis . I was told MRI normal and ignored but had stage 4 endo infact.

My doctors weren’t sure what was going on, told me I could have a lap done but also said it wouldn’t show anything, turns out My gut feeling was correct as it showed endo, so they burnt it away. Since then my symptoms have eased. It’s worth having down just for peace of mind also. Hope you get it sorted soon

Anon247
Anon247 in reply to DisneyP

Thank you! Exactly what I was told yesterday that it wouldn’t show anything, and the pressure was put on me to make a decision which is hard x

If you are on Facebook join Nancy's nook endometriosis group - so much information and guidance, its helped me so much!!! It is a self education group on everything endometriosis, it will give you so much education and guidance on diagnosis before you jump into anything. If you are having a lap, a lot of surgeons are not as specialist as you think, for example I had a lap 5 years ago at age 21, got diagnosed and they didnt remove anything (why, because they were not as specialist as they should be so I have had wasted surgery basically!). Now that I have found this group I will be starting my joirney all over again with an approved consultant. Nancy's group has a list of approved consultants which have been reviewed on their expertise with endo x

Anon247
Anon247 in reply to Blb21

Ahh thank you that helps so much. Do you know the process of getting referred to an endo specialist?

Blb21
Blb21 in reply to Anon247

I am not 100% sure as looking into it myself at the moment as my symptoms are worsening and my gp a couple months ago refused to refer me back to consultant and just says oh you have IBS... which may be true, but it is likely the endo causing the ibs like symptoms.. If you join the Facebook group they give you so much reading to do to self educate, and in there is a list of their suggested consultants, there are not many in the UK but worth a look. What I am going to do is go back to my gp with the names of the uk consultants on that list and ask/insist to be referred to one of them, you'll really need to emphasise that alot of consultants say they are endo specialist but they are not experts in excision, alot dont even suggest excision, but they suggest ablation, when reading all of the information on the group it shows how inadequate this is and that we really need to push for consultants who are actual specialists and believe in excision and have other multi disciplinary colleagues on hand should there be endo in other areas such as the bowel etc. GPs often dont have the expert knowledge behind endo so will dismiss it, we need to be the ones to push it and ensure you get the best treatment 😊

Blb21
Blb21 in reply to Anon247

(Also lap is the only way to diagnose, so go for it 100%, just make sure you're with a good one so your journey to getting better is as smooth and informed as possible 😊)

Dear

Must people don’t understand that endometriosis is not just inside the uterus. If you feel pain with bowel movement you probably have deep endometriosis, that might be in the intestines. Keep in mind that laparoscopy is invasive and the can sometimes worse adhesion processes.

Endometriosis is an inflammatory and chronic disease so you got to change your diet if you haven’t so far. There are also some treatments with herbs to help desinflame, só you could try to go on a herbalist

Wish the best

Anon247
Anon247 in reply to JuliaJambo

Thanks for that, I’m going to have a look into my diet, I think I am scared to have a laparoscopy done for that reason of like complications and making it worse

I am just going though this (by proxy with my 23 year old daughter!), push for a lap, that is what we are going to do when she has her gynae appointment. We have also taken the precaution of having hormone blood tests done at the GP so the results are ready for the gynae appointment (as it was such a long wait). Don't know yet if this WILL help or not. It is so easy for health professionals to say it is normal but they are not experiencing the pain or inconveniences of it! Totally agree that pain management is so much easier to cope with mentally if you know for sure what it is. Stand up for your self, unfortunately you need to shout loud to get heard these days, not right but a fact of life! Good luck with it all

Anon247
Anon247 in reply to mavis1969

Thank you so much!! I think I’ve decided to get it done I want to know what the issue is. Instead of playing a guessing game

If your symptoms are causing you that much grief I would say go ahead and do it. Make sure that who ever is doing it is bsge accredited and if they're not try and get your gynecologists or gp to refer you to someone who is. Hopefully someone who knows what they're on about can advise you some more on this but you could start by googling nice endometriosis guidelines and bsge. It's really hard getting drs to listen and it shouldn't be. If your having pain from opening bowels this really needs to be looked into properly, do you get deep pain with sex or examinations as well? Just really do your homework and make simple notes the next time you speak to Dr/gyn of what you want achieved and any questions you have. Also ask them for the reasons for what they are thinking it is/ isn't ( as politely as possible). I have recently been booked in for a consultation with my local bsge gynecologists who can supposedly do specialist ultrasounds to see if there is bowel involvement and if he feels lap is the thing to do he will do it. My symptoms effect my life severely so I am glad this his happening but I still have to wait until august next year. But anyway, my point is, this is after previously being 2 weeks away from having a diagnostic lap with a general gyn and getting pregnant so lap cancelled. Then got coil and referred back to gyn about 6 months after having baby. This gynecologists had to see me before I could be reffered to the specialist. She wrote on the letter to my Dr that "in her opion endometriosis is not the cause for the patients symptoms" she said she thought it was bowel related... And the referred me to this specialist anyway! Sorry hope I'm not post hijacking, just wanted to show you how many circles you can sometimes go round in unless your assertive from the start. Probably better for me this way than having the lap as originally planned :) Also 2nd to Nancy's nook on Facebook, hard to navigate to begin with but there is some very useful info on there. Good luck :)

Thanks so much! Yeah I can understand your point of going round in circles, I’ve been under gastro specialists before, told I had IBS and constant UTI symptoms with negative test etc it’s all just a minefield and being so young makes it hard to be taken serious i think x

Yes you can do a lap but first, was the MRI checked for Adenomyosis, as it sounds like you may have that. Mind you, sometimes you can't see that on an MRI either. Find a Nook approved surgeon (Nancy's Nook on Facebook groups) to get a lap and possible wide excision if there's Endo. Your pain is there, it's real!

MRI was checked for endometrial tissue I believe which came back all clear. I’m back next week to see the gynae who said I can have the lap done so do I asked to be seen by an endometriosis specialist at that point? Or just let them get the lap done?

I feel like I have no support, I’m arguing with family over trying to explain the whole endometriosis specialist vs standard gynaecologist and I feel like just giving up :(

Definitely have the laproscopy. It’s the only way to have it diagnosed. I had one yesterday expecting a ovarian cyst and mild endometriosis but I have it everywhere and my ovary was stuck under my uterus. So even if it comes back clear at least you know xxx

why would he/she say nothing will show on lap? endo most of the time SHOWS only on lap unless it's extra pelvic or big enough to show on scan. if you have pain get it done, and look for a better endo specialist!

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