Endometriosis in Bristol beibg ignored

Niki,I think doctors ignore women with endo all over the country. That's why the average wait for diagnosis is ten years. The best thing to do is to take the situatuion into your own hands and get some control. This will make you feel better.

I just went to a place in London and got a reallt detailed scan. I didn't need areferrel I just phoned up and booked. I live hours away from London but I drove down really early before the traffic got bad. The guy who did the scan is the best sonographer in the UK who just scans for endo. HE could see exactly what was wrong and explained it all to me and gave me treatment options. He said he could also refer me to a gynae if I wanted.

I had to pay money for this it was nearly 400 pounds but in two days I knew exactly what was wrong, what treatment options I had and I can now get a referrel to a specialist gynae without even seeing my GP or waiting for months.

Even if you do find a GP who is understanding the waiting list to see a gynae is really long on the NHS you will wait 6 months to see a gynae then another 2 or 3 for a scan. Then another long wait to see the gynae again.

Ideally the NHS would be more help but they are snowed under with so many patients waiting and not enough staff. Message me directly and I can give you details if you think this could help you.

Ifyou feel you know what is wrong and have some control over th esituation just that will help.

nikkimatt2019 in reply to Avourneen2 years ago

Hi thank u for messaging. Ive seen gp's , gynaecologists and specialists ive been neglected all my life. My story is so long to write but I will write a bit. I seen a specialist twice in southmead hospital called mr Jean Brice hes useless he dont know what yes talking about. Ive recorded him with my last convo and my partner is witness in room also as alot my records is vanished from the day I was born even my first operation disappeared from records and I have discharge letter all vanished that's why ice been keeping my letters and I'm starting to record the conversations due to they say 1 thing then next they change the conversation the next time we see them. I've been going through this at very young age they would neglect me all time. Contraception dont work no pain killers work and they are aware of this and I'm 26 years old now and still not getting anywhere. I spoke to gp after mri and I was ment to have following up scan while waiting for to see specialist. When I spoke to gp they said I should of had a scan while waiting because pains has gotten worst and it feels like its spread. Its affecting my bowels my stomach sides above buttocks ribs, legs nerves go which possible its spread to my nerves as well my stomach goes so tight like someone is squeezing the whole insides to point I cant breath.even pain under rib all server pain I get my partner witnesses this everyday seeing me in so much pain. Where it's also effecting my nerves in my legs I'm starting to lose balance also. My stomach bloats so much to point I puke it feels like my stomach is about to explode. It feels like everything is stuck. Even when I go wee little bits come out then soon as go number 2 the rest of wee comes out but it's all pain full I fell over twice couple weeks ago and the only way to describe is that where it's all stuck inside felt like I ripped it apart a little bit I could go on with this endometriosis but it's to much to write my health and what I've been through with them is probably about 1-2 big books of stories. Back in 2019 if it wasnt for my partner I would of veen dead even gp said that to me and my partner that I was lucky because I ended up with 6 polyps size of golfballs they said I was close of having cancer also and thanks to my partner back in 2019 I got the op and pulled through then not even a year I ended up with 2nd load that apparently some how come out then I apparently had 3rd load come back and was left once again. I also had them go behind my back and also tey to put a coil in me when I said no!!! But they went behind my back and tricked me saying it was another scan but lucky I stopped them. I have 2 double lining endometriosis the scan shows very clear. But they first said it was inside ny womb now the specialist is saying it's not in my womb it's onthe outside of my womb which either way feels like it's done more damaged and spread I can feel it all. It now feels like its gone to my arm as i can feel a hard lump in my arm also painful. My body grows things really fast. Using as example they said the polyps dont come back till after a year but yet I had 3 different time with 3 loads under year 1st I was lucky to survive as it was so bad. I've always been neglected they dont take me serious until it's to late. I'm thinking of getting second opinion . St Michael hospital they hace always neglected me if it wasnt for my partner bk in 2019 I would been dead because of them I wouldn't trust them with my life knowing them they would allow me to die. Ive never had good experience with hospitals and gp's. Theres so much. I hate family and to me dont have any they can rot but other story. but I'm really scared as cancer runs in family and all have died. It runs in Gene's even gp and hospital has said that. And sadly I seem to be unlucky. I was told I'm high risk with cancer also which is my worst nightmare and if endometriosis is left untreated theres possibility my body is gonna be so damaged to point I will prob end up with cancer and die either way because they way they are going on. I've been constantly fighting for these appointments and still fighting because my life is on the edge really which is very scary.

nasha08 in reply to Avourneen2 months ago

hi, I don't know if you'll see this, but I would love the details of the sohographer in London please. My endo journey is too long to talk about here, but as many other women here, I have to take it into my own hands. I came across Jessica Pershaw and I'm trying to get to see her, she's in Bristol NHS hospital, Southmeade. thank you

Endowarrier2222 in reply to nasha081 month ago

Hi I can help with this!! I saw him too in London, he’s a world renowned specialist when it comes to ultra sounds. His name is Prof Davor Jurkovic, I arranged it through the Endometriosis clinic in London but in sure if you google his name you’ll find how to arrange an appointment

LisaAmazona2 years ago

A few thoughts-- As it seems like Bristol are actively neglecting your care, you could go to Healthwatch who might take up your case and advocate for you. Here's the link for Healthwatch Bristol. It is independent of the NHS and, at the very least, the concern will be logged so if they see a pattern of this kind of neglect they can act. Tell them your whole story, including the initial misdiagnosis. It sounds like your care has been completely subpar all along. healthwatchbristol.co.uk/wh...

I live in Devon and my daughter (19) was in severe pain. We suspected endo. The lead of the Plymouth Endometriosis Centre who is also a BSGE member also sees patients privately and since the pain was so bad she was no longer able to function at uni or even doing ordinary daily living tasks we decided to go that route. Daughter had been fobbed off in the past by NHS gynaes, so we just didn't want to risk waiting months (or years!) only to be fobbed off again like you have been. It makes me absolutely furious that the NHS is not there for every patient, especially ones that are suffering so much but, if you accept that, then private seems to be the only choice. This doctor was not dismissive at all and, although we could have gone down the scans route and spent a lot of extra money, since exploratory surgery would be necessary anyway and scans don't always show much, we went straight for the laparoscopy. Daughter had been scanned at hospital in London when she went to A&E for severe pain and they could not see her left ovary, so we did already have that. From what I've read here, the cost was a lot less than what people have paid in London. All in, including initial consultation, surgery and follow-up appointment was £4500. I know, still a lot, but not nearly as much as I've heard people talk about in London. He charges £200 for just the initial consultation if that might help you. You could get a letter recommending care that you could take back to your GP or gynaes. Time frame for all this was--March 15th--initial appt. April 2nd--surgery. Very fast. In case you're wondering, daughter didn't have any signs of endo (phew!) but her left ovary and fallopian tube were buried in adhesions, which were causing all the pain. Doctor was able to release and excise the adhesions and she has been pain free since.

Just wondering--are you actually seeing gynaes at one of the Bristol NHS Endometriosis Centres? Looks like Bristol has two. One at St Michaels' Hospital at University Hospital Bristol with gynaecologist Mr Oliver O'Donovan. And the other at Southmead Hospital with gynaes Ms Jessica Preshaw and Mr Islam Gamaleldin. Other gynaes outside of the endometriosis specialists may be more dismissive.

Wishing you lots of luck with whatever you decide.

nikkimatt2019 in reply to LisaAmazona2 years ago

Hi thank u for messaging. Ive seen gp's , gynaecologists and specialists ive been neglected all my life. My story is so long to write but I will write a bit. I seen a specialist twice in southmead hospital called mr Jean Brice hes useless he dont know what yes talking about. Ive recorded him with my last convo and my partner is witness in room also as alot my records is vanished from the day I was born even my first operation disappeared from records and I have discharge letter all vanished that's why ice been keeping my letters and I'm starting to record the conversations due to they say 1 thing then next they change the conversation the next time we see them. I've been going through this at very young age they would neglect me all time. Contraception dont work no pain killers work and they are aware of this and I'm 26 years old now and still not getting anywhere. I spoke to gp after mri and I was ment to have following up scan while waiting for to see specialist. When I spoke to gp they said I should of had a scan while waiting because pains has gotten worst and it feels like its spread. Its affecting my bowels my stomach sides above buttocks ribs, legs nerves go which possible its spread to my nerves as well my stomach goes so tight like someone is squeezing the whole insides to point I cant breath.even pain under rib all server pain I get my partner witnesses this everyday seeing me in so much pain. Where it's also effecting my nerves in my legs I'm starting to lose balance also. My stomach bloats so much to point I puke it feels like my stomach is about to explode. It feels like everything is stuck. Even when I go wee little bits come out then soon as go number 2 the rest of wee comes out but it's all pain full I fell over twice couple weeks ago and the only way to describe is that where it's all stuck inside felt like I ripped it apart a little bit I could go on with this endometriosis but it's to much to write my health and what I've been through with them is probably about 1-2 big books of stories. Back in 2019 if it wasnt for my partner I would of veen dead even gp said that to me and my partner that I was lucky because I ended up with 6 polyps size of golfballs they said I was close of having cancer also and thanks to my partner back in 2019 I got the op and pulled through then not even a year I ended up with 2nd load that apparently some how come out then I apparently had 3rd load come back and was left once again. I also had them go behind my back and also tey to put a coil in me when I said no!!! But they went behind my back and tricked me saying it was another scan but lucky I stopped them. I have 2 double lining endometriosis the scan shows very clear. But they first said it was inside ny womb now the specialist is saying it's not in my womb it's onthe outside of my womb which either way feels like it's done more damaged and spread I can feel it all. It now feels like its gone to my arm as i can feel a hard lump in my arm also painful. My body grows things really fast. Using as example they said the polyps dont come back till after a year but yet I had 3 different time with 3 loads under year 1st I was lucky to survive as it was so bad. I've always been neglected they dont take me serious until it's to late. I'm thinking of getting second opinion . St Michael hospital they hace always neglected me if it wasnt for my partner bk in 2019 I would been dead because of them I wouldn't trust them with my life knowing them they would allow me to die. Ive never had good experience with hospitals and gp's. Theres so much. I hate family and to me dont have any they can rot but other story. but I'm really scared as cancer runs in family and all have died. It runs in Gene's even gp and hospital has said that. And sadly I seem to be unlucky. I was told I'm high risk with cancer also which is my worst nightmare and if endometriosis is left untreated theres possibility my body is gonna be so damaged to point I will prob end up with cancer and die either way because they way they are going on. I've been constantly fighting for these appointments and still fighting because my life is on the edge really which is very scary.

goblinguts2 years ago

Hi, I'm in Bristol too. Have you only been able to see a GP so far? Because there's an endometriosis centre in St Michael's hospital that I got referred to eventually. First the GP referred me to a gynaecologist at St Michael's, then the gyno referred me to the endometriosis centre, where I've been seeing endo specialists for about 2 years now. They also performed my laparoscopy in January.

They're not always perfect, I think it's generally quite hard to get taken seriously with endometriosis because I feel like it's so poorly researched and understood that even specialists don't always have the correct information, which can be very confusing. But they at least are more on the ball than the average GP.

The other thing is I had to jump through a lot of hoops before surgery was really on the table. They knew I had an endometrioma and insisted I take birth control for a certain amount of months to see if that made the cyst shrink (which I don't even think is possible??) or just made the symptoms manageable enough. But keep pushing for surgery if you feel you need it.

I don't know how old you are but I've been having symptoms of endo and adenomyosis since I was about 14 and doctors definitely didn't take me seriously back then. But I didn't even know about endometriosis at the time so I never brought it up. So I guess at least you know about it. I'd suggest pushing for a referral to the endometriosis centre at St Michael's in town if you haven't already. As I said, I had my surgery there eventually, but they can also do more detailed scans - as in, they can do an ultrasound and because they know exactly what they're looking for they can give you a better idea of where the endo is.

Best of luck x

nikkimatt2019 in reply to goblinguts2 years ago

Hi thank u for messaging. Ive seen gp's , gynaecologists and specialists ive been neglected all my life. My story is so long to write but I will write a bit. I seen a specialist twice in southmead hospital called mr Jean Brice hes useless he dont know what yes talking about. Ive recorded him with my last convo and my partner is witness in room also as alot my records is vanished from the day I was born even my first operation disappeared from records and I have discharge letter all vanished that's why ice been keeping my letters and I'm starting to record the conversations due to they say 1 thing then next they change the conversation the next time we see them. I've been going through this at very young age they would neglect me all time. Contraception dont work no pain killers work and they are aware of this and I'm 26 years old now and still not getting anywhere. I spoke to gp after mri and I was ment to have following up scan while waiting for to see specialist. When I spoke to gp they said I should of had a scan while waiting because pains has gotten worst and it feels like its spread. Its affecting my bowels my stomach sides above buttocks ribs, legs nerves go which possible its spread to my nerves as well my stomach goes so tight like someone is squeezing the whole insides to point I cant breath.even pain under rib all server pain I get my partner witnesses this everyday seeing me in so much pain. Where it's also effecting my nerves in my legs I'm starting to lose balance also. My stomach bloats so much to point I puke it feels like my stomach is about to explode. It feels like everything is stuck. Even when I go wee little bits come out then soon as go number 2 the rest of wee comes out but it's all pain full I fell over twice couple weeks ago and the only way to describe is that where it's all stuck inside felt like I ripped it apart a little bit I could go on with this endometriosis but it's to much to write my health and what I've been through with them is probably about 1-2 big books of stories. Back in 2019 if it wasnt for my partner I would of veen dead even gp said that to me and my partner that I was lucky because I ended up with 6 polyps size of golfballs they said I was close of having cancer also and thanks to my partner back in 2019 I got the op and pulled through then not even a year I ended up with 2nd load that apparently some how come out then I apparently had 3rd load come back and was left once again. I also had them go behind my back and also tey to put a coil in me when I said no!!! But they went behind my back and tricked me saying it was another scan but lucky I stopped them. I have 2 double lining endometriosis the scan shows very clear. But they first said it was inside ny womb now the specialist is saying it's not in my womb it's onthe outside of my womb which either way feels like it's done more damaged and spread I can feel it all. It now feels like its gone to my arm as i can feel a hard lump in my arm also painful. My body grows things really fast. Using as example they said the polyps dont come back till after a year but yet I had 3 different time with 3 loads under year 1st I was lucky to survive as it was so bad. I've always been neglected they dont take me serious until it's to late. I'm thinking of getting second opinion . St Michael hospital they hace always neglected me if it wasnt for my partner bk in 2019 I would been dead because of them I wouldn't trust them with my life knowing them they would allow me to die. Ive never had good experience with hospitals and gp's. Theres so much. I hate family and to me dont have any they can rot but other story. but I'm really scared as cancer runs in family and all have died. It runs in Gene's even gp and hospital has said that. And sadly I seem to be unlucky. I was told I'm high risk with cancer also which is my worst nightmare and if endometriosis is left untreated theres possibility my body is gonna be so damaged to point I will prob end up with cancer and die either way because they way they are going on. I've been constantly fighting for these appointments and still fighting because my life is on the edge really which is very scary.

goblinguts in reply to nikkimatt20192 years ago

Mate I'm so sorry you've been through all that, sounds like you've had a really rough time. It's so hard to get properly listened to and get the treatment you need. I wonder if endometriosis UK or other charities can provide patient advocates, so someone to go with you to appointments and fight your corner. Sorry I can't be of more help, good luck in and all the best x

nikkimatt2019 in reply to goblinguts2 years ago

I will give that sight ago also and put complaint in. Thank yous

nikkimatt20192 years ago

Thank yous so much I'm sorry yous had to go through all this as well.

Blue17452 years ago

Hi,I lived in London when growing up and when I first started work now I live in the Midlands (for many years) and it’s been a battle in each area to be taken seriously with regards to my endometriosis. No NHS trust seems to want to deal with it.

Personally I’ve found that it’s individual consultants who are willing to listen and act proactively and as they move around NHS trusts during their careers it’s potluck.

I’m 43 now and have had endometriosis since my periods started a good 30 years ago and I’ve tried most things (contraceptives, zoladex injections, surgery…) all have their pros and cons and all work for a while but not for ever.

I got tired with all the invasive scans at the hospital and just felt my dignity slipping away so I’ve given up on that front and just try to deal with it myself with diet and supplements. Hopefully the menopause will hurry up and I might get some energy back before I’m dead 🙄xx

nikkimatt2019 in reply to Blue17452 years ago

Hi I'm so so sorry you have had to go through this but plz dont g9ve up that's what they want you to do!! Honesty I know this I've been going through this many many years I'm only 26 years old and I would advice to get advocate involved as they help with speaking to gp and hospital and sort this out. I've got them 8nvolved atm. I'm having more server pain so have gp appointment once again tomarrow and ice asked for my scans we all know are bodys I cant have children because of hospitals and gp's they have damaged my body so so much to point I had tests and everything saying I cant carry children I had a miscarriage many years ago because of the endometriosis but I hacent came on my period this month just had bleeding 1 day was quite a bite and now nothing literally I'm scared because something feels of and wrong about my ovaries and womb area and because they neglected me all this time now I have more health problems on top and some is still be9ng investigated. They said I could also potentially end up blind also I may have something wrong with my spine. Everything is to much I feel like cause theres so much going on I may not be lucky. But I'm still fighting because they need to understand they can not leave us like this and make us suffer it's wrong.

Blue17452 years ago

Bless you.Don’t believe everything they tell you. They told me I would never conceive either but my son will be 16 in a couple of weeks! They told me that was a miracle, it was as I’ve never been able to have anymore children.

I have other health problems too I’m sure they’re linked to the endometriosis but no doctor is ever willing to make the link.

Swelling joints and chronic fatigue amongst other things. They try to make out that we’re over reacting.

What’s worse is that I work in healthcare, I’m more than happy to speak up for those I care for but for myself it seems to be a never ending battle with little to no results.

I hope they help you, you’re only young xxx