Doctors don’t listen when it comes to endometriosis 😡

[Warriorpc]

Am sitting in altnagelvin right now Ward 43 ,was admitted with stomach pain . I was told I had endometriosis Back in 2007 and then got keyhole surgery. After that I was told your endometriosis has gone away your womb etc is clear. But now every time I have a really bad flare up before and during my period am told it’s not endometriosis cause you got the all clear few years ago. But am I right in saying hold on can’t endometriosis grow back?? . They don’t want to know, I refused to be send home yesterday as I couldn’t even walk I was in that much pain I was brought in by ambulance on Tuesday at 3pm and I was only getting to ward at 2 this afternoon Wednesday (waited over night in a@e) 😡and yet once am up in gynaecology ward am told nothing to do with endometriosis. Cause you got the all clear years ago,Am so angry 😡 sorry for the long post lol

[Jasmin24]

Hi Warriorpc Firstly I feel your frustration, as I was in a similar situation.

Gynae fobbed me off, I ended up on the neurology ward, due to the the reaction of a medication, my consultant recommended I take.

Request you want a second or even third opinion. Also MRI, they can't just assume, alot of changes could happen in a period of time.

Also give PAL'S ( patient advice liaison service), a call, which is based in the hospital, if you don't get anywhere.

Never apologise for ranting. We all need to do it to stay sane.

I do wish you a speedy recovery....and hope you get out from hospital soon! 😊

[Warriorpc in reply to Jasmin24]

Aww thanks x got loads of scans today lol but not a mri 😢they done two Transvaginal (internal) on Tuesday and one today, a tummy scan and a ultrasound and everything came up clear. One doctor said it could be droplets of endometriosis that don’t show up on scans whatever that means🤷‍♀️Then her senior came and seen me and said ye know what paula this is not a gynecology problem as everything showed up clear in your scans , plus you got the all clear from endometriosis a few years back. I was like ffs can it not grow back 😂

[Jasmin24 in reply to Warriorpc]

Just reading the other comments too. H4PP1 suggested private MRI. It took also 10-15 years for anyone to listen to me or even take me seriously. To the point I found it so unbearable, that my mum paid for me to have a MRI and scan privately. That was when I a doctor first took notice, then referred, had surgery, only to be told I had multitude of endo along with adenomyosis , fibroids and cysts. That was when I was first got a diagnosis. Now it's grew back again!So it can grow back .

Tell your doctor to refer you to a BSGE clinic if you don't get anywhere.

Hang in there!

[Adeno2020 in reply to Warriorpc]

So sorry to hear this I had exact same issue 3 weeks ago. Gynae saying it wasn’t a them problem as only had ovarian cyst and wasn’t appendix either gynae are USELESS

[Warriorpc in reply to Adeno2020]

They really are unless. Like they sent me home yesterday with no pain relief I could barley walk and my belly had swollen 3 times it’s normal size , and it’s still like that today. Can’t get threw to gp to get pain relief, it’s a disgrace they even let me out . From there end he said it’s not gynecology problem even after I more or less begged them to believe me it’s endometriosis, they make you feel like it’s all in your head Like look at my belly that’s not normal , I don’t have wind no bother going to bathroom and I haven’t eaten anything cause I feel sick so why is my belly so swollen. 😢

[Adeno2020 in reply to Warriorpc]

Feel for you I’ve been there think we all have! I have even been once because I was in a lot of pain of right side was ovarian cyst 4.0 cm they sent me away 3 times went back because another badger center thought is was appendix ended up hving an emergancy op because my cyst was leaking. And they told me before it’s just endo take pain releif! But when it is actually endo gynae send you away! 3 weeks ago gynae kept sending me back to main hospital surgical team and Honnestly they was telling me loads about the gynae team how they send patients hear there and everywhere and talk them out of believing it’s gynae related! One girl I know said her gynae sent her to see a shrink because they told her it’s on in her head!! I’ve had nurses say about me she’s just in here because her period. Endo is not taken seriously I really hope you get it sorted don’t give up. X

[Adeno2020 in reply to Warriorpc]

Also can I add about the ultrasound ... withh hi big 3 days I was seen in two hospitals and had 3 ultrasound scxans... all three shown different things!! So they’re not accurate and endo can’t be seen on them. And even when endo has been removed it grows or can grow back x x

[H4PP1]

Hi lovely, firstly please accept this message and all others from this forum as a virtual hug. It took me 6 years to get a diagnosis and that was because I paid for a private MRI scan after 3 transvaginal, 1 MRI and 2 colonoscopies showed up clear over those years! I was also told my pain must be ‘psychosomatic’ or all in my head by my GP when I broke down in tears in her surgery.

I would suggest it really does grow back, at least all my reading tells me so and many here have talked about it returning only 2-3 years later and have had several excisions over and over. Keep pushing but perhaps it is a different place that can help? Private MRI did it for me.

[MMich15]

Hi warriorpc I really felt your stress through your writing... it’s really not fair. First and foremost for the first 6 years I had endometriosis I was told you can’t see endometriosis on an ultrasound, and yet now, doctors and hospitals are using that to fob off endo sufferers to say “there’s nothing there”. So no, do not take that as conclusive you don’t have endo.

Secondly it may just be me but I have never heard of any woman who had endo, suddenly not having endo, especially if they’re having regular periods. Only people who have stopped their periods completely or have found effective meds that suit them have seen better symptom management.

And lastly, agree with all the other comments - I know it’s hard, you’re in pain, drained and exhausted but don’t give up and keep fighting until it’s taken seriously. I ended up in a&e unable to walk and they just kept giving me morphine until the pain eased up and sent me home, they refused to do an ultrasound - 2 weeks later got one via a GP referral and they found a 12cm endometrioma cyst... I always lost faith and determination from being fobbed off and that’s why I’m now looking at my 3rd surgery. I’ve recently seen a BGSE specialist and she’s the first I’ve seen that can spot endo on ultrasounds and actually looks to check organ health, seeing if the ovaries are freely moving, attachment to bowels... from my experience and what I’ve read of others this is highly unusual and almost never happens with scans.

I really hope you find the right care and treatment soon x

[Warriorpc in reply to MMich15]

You poor thing that sounds so painful. Yeah in a&e they were pumping me with morphine as well, and once the pain eased he was like you can go home now 😂I was like no I won’t go home you will admit me and give me the prober care I need. Think they left me in a@e over night for badness before finally getting me to a ward lol anyway just seen doctor (there doing there rounds) again they don’t think it’s even gyni related and I said am sorry but your wrong I know my own body I know it’s endometriosis and she just well get your gp to refer you to the right people then. She thinks this pain is connected to my bowel and they don’t deal with bowel so there just letting me out . Me still in pain like 😢I agree there could be something wrong with my bowel there is 2 different things going on for sure . But they don’t wanna no cause all there scans are clear and that’s all that matters to them 😡

[MMich15 in reply to Warriorpc]

They’re always trying to pass you on, I don’t think they realise how they’re making people feel by doing that - like they’re irrational and a burden. But good on you! You have been strong and determined, keep it up.

My endometriosis is on my bowels too, in fact this latest development shows it’s attached to my ovaries via an endo nodule - this could very well be the case for you. Just because it isn’t in the womb specifically doesn’t mean it isn’t endo. Last time I spoke to my gp about it he said “endometriosis is only in the womb” to say I eyerolled is an understatement. I hope you get answers soon and the care you deserve. If the gp refuses to refer you to a gyna ask to be referred to a colorectal specialist - if there is endo / issues with your bowel they should be able to see it via and MRI (that’s how my nodule was picked up) or via a colonoscopy.

[Warriorpc in reply to MMich15]

Thanks so much x I will be ringing my gp first thing xx

[Hidden in reply to MMich15]

Hi Mary, Your post made me laugh about the "eye roll" when the Dr said an ignorant and untrue thing. I think that all of us with endometriosis are on our way to becoming "expert patients".

I've taken some time off work after a laparoscopy for endometriosis, and I've read everything I could about it these past days.

[Moonglo]

Hiya, show them the endo UK leaflet about laparoscopic surgery: endometriosis-uk.org/sites/...

See page 2 - it mentions the success rates of surgery. It also depends on the technique they used, which is also described in the leaflet. Excision, for example, only cuts it out but doesn’t necessarily get rid of the ‘roots’. But even the other types of surgery isn’t foolproof.

[Moon_maiden]

HiStand your ground, hardly anything showed on my scans last year, but lots there and I think still is.

Probably a registrar telling you that, and I’ve seen many posts and research that it does come back. Tell them you want to speak to a consultant who has an interest in endo plus MRI.

Don’t let them use age either as I’m 52.

Good luck 🤞

[Warriorpc in reply to Moon_maiden]

Thank you x

[Kris_23]

Pls don’t be sorry 😢 totally feel your pain and dilemma. I totally agree with you, I don’t think the medical team completely understand what pain we go through and suffering mentally. They keep telling us take tablets and be patience. You did the right thing, refused to leave until they listened and sorted your pain. This isn’t right to suffer this way.

Hugs 🤗 for you xx

[Warriorpc in reply to Kris_23]

Thanks huni x my mood has got so low cause of all this , they make you feel like your telling lies about your own condition 😢

[Kris_23 in reply to Warriorpc]

🙋🏻‍♀️ Yes My friend 🥰

I can totally relate to this, because when you have those days in pain it’s so bad, to the point you can’t move, where are the Medical People??

Whom can you turn to ? I could cry at times 🥺 we are all with you on this x

I agree with some advice these lovely ladies given! Go to PALS ! Get answers. X We got to make them listen 🤨 x

[MandyLouise]

So sorry for your pain, I can assure you it grows back as I’m having my fourth surgery for it next week. It’s a sad thing when doctors do t listen but do keep trying. I had a similar problem with a endo specialist and he was adamant it was in my head even though I’d had 3 surgeries already!! So I transferred to another hospital after I spoke with my GP, he understood my pain (though almost sure he wanted me out of his office) and I was referred quickly to the hospital, it’s been over almost 2 years but finally having my surgery.Request a referral, listen to your body not the doctor. There is no 100% way unless you have pain management, and there are doctors who will listen so stay strong, it will work out x

[Warriorpc in reply to MandyLouise]

Thank you, if I get told you had surgery and nothing was where I’ll say well I know a girl who got 3 surgeries and it kept coming back!!so I’ll be saying stop talking shit 😂 and way go and learn your degree all over again and learn about Endometriosis while your there 😂me and you could probably be better doctors than them ffs we know are stuff they haven’t a clue 😆

[Greenlady48]

Hi warriorpc

Hope you are out of hospital. That is an awful experience. Yes 100% endo can grow back. So can cysts so can fibroids. All of it. It makes you angry and makes you upset and all the doctors make you believe it’s all in your mind. Ive been in the exact same position. They talk down to you like your a fake. Every nhs dr Ive met has been the same. In the end I paid the 200£ and saw a private gyne dr. It really was the best money spent. He diagnosed adenomyosis I’m now waiting for blood results. 30 years I’ve had pain. For me it never went away. I’m now going through menopause and having HRT to help with the crap that goes with that. Never let them get you down or dismiss your pain. You know your own body better. Big hugs xx

[Warriorpc in reply to Greenlady48]

It’s so awful but I did stick up for myself this morning saying “I know you doctors don’t think it’s endometriosis but let me tell you there bloody well is, I have pelvis pain heavy periods pain during sex etc etc so don’t tell me it’s not endometriosis when I know my own body. The Doc then says But you got the all clear years back from the specialist , and I was like rolling my eyes and said you do know it can grow back at anytime , so am not getting throbbed of anymore. Gp will be getting a call and am asking her to put me on a hormone pill 3 month trail just to see if it works x

[Tillyfloss]

Hi. How are you feeling? It's so frustrating, I got fobbed off for years, clear scans and basically told I was a time waster. Turned out to be stage 4 deep infiltrated endometriosis and a full frozen pelvis that even a very good endo speicealist couldn't see on my ct/ Mei scan. After my surgery he said it often comes back and if I start with any symptoms to get in touch so yes it does come back . If your still in hospital ask to see the pain team ( I found them very helpful) and as mentioned use pals. Good luck. Xx

[Warriorpc in reply to Tillyfloss]

God love you that sounds horrible. Am home now and will be phoning gp in the morning to maybe put me on a 3 month trail hormone pill see if that helps .

[Tillyfloss in reply to Warriorpc]

Hope you are comfortable. Have you tried the endo diet? I wasn’t convinced but it did actually help, I was able to work out what triggers pain ( I have it on my bowel and bladder) and even though it was time consuming it helped me. Hope that your gp can help, might be worth doing a bit of research as if I remember rightly some hormone pills can aggravate it. It’s a difficult condition to live with and one that doesn’t seem to get taken very seriously. Take care. Xx

[Heloo85 in reply to Tillyfloss]

Hi, I hope you don’t mind me jumping in on this! You sound very familiar to me! Have you had surgery for Endo?

I, like you, had stage 4 die, bowel and bladder involvement, frozen pelvis... My first lap was radical excision! It was serious surgery, not conservative! It was major!.. The whole shabang of hours long with extended hospital stay... I’m wondering what happened to you after your surgery!?

I see that your consultant said if you had further problems, to go straight back? At what point was you discharged?

The reason I ask is because i am trying to figure out what the NHS has hidden from me for 4 years! I had my surgery 4 years ago, then remained on 3 monthly consultations!.. I was almost moved to 6 monthly, but then I almost got an agreement to another lap, then Covid hit! Long story short, I got hospitalised with sepsis, abscessed complex mass on left ovary, nodules of Endo and fibroids! I’m down for a hysterectomy in the next few weeks...

Anyway, I have overheard Drs call me ‘a complex case’... But no Dr yet has explained as to why I’m ‘complex’. I know very little about my original surgery! All they keep saying is I’m complex, and I mean I was complex before this new lot of severe disease got so bad again it almost killed me! I would like to see how the NHS has treated you, to see if I am out of the ordinary! I don’t believe my original surgery went as smoothly as they made out and there is more to this than they’re letting on! I might be paranoid, but, the NHS don’t usually keep people on follow up for 4 years for nothing xx

[AllWeNeedIsluv in reply to Heloo85]

Hi there. So sorry for what you've endured. Get intouch with the hospital and get a copy of your notes. They cant hide things from you. You'll have to fill in a form but they will send them to you within 30 days i believe xx

[Tillyfloss in reply to Heloo85]

Hi. How are you doing? Yes we sound very similar, I am also a complex and challenging case! After my surgery I was in for 4 days and was told I needed prostap for 6months whilst I healed. If I remember rightly I had a check up about 8 weeks with a member of the surgery team, they explained again exactly what they did ( my scans had been normal, just showed a tricky cyst which is why I referred to the bsge centre) so the frozen pelvis and extent of the endo was completely unexpected. They were very honest, my bowel and bladder are beyond help but they hoped what they had done would reduce my pain which it did. We went on to have ivf. ( long shot as both ovaries damaged) but the long shot is a delightful 19 month old 😊. As we got passed on to the fertility clinic the endo checks reduced to just 6 monthly phone calls until the clinic closed ( the surgeon has gone abroad). I’ve fortunately not had much pain since, the odd flare up that I have been able to manage. I do have to be really careful with what I eat and if I get over tired it can start. After the ivf they said if I got any problems to request a referral to a centre but I’ve been lucky so far. As suggested you can request your notes but my surgery notes didn’t make sense to the team doing my c-section so it might not help. Have you had continued pain over the 4 years? I’m confident that if my pain hadn’t improved they wouldn’t have discharged me. My experience at the local hospital and emergency surgery with misdiagnosis wasn’t great but once I was in the hands of the bsge specialist both him and his team were amazing, patiently answering my questions and explaining things along the way . Are you in the uk? Cx

[Heloo85 in reply to Tillyfloss]

Hi yes I’m in the U.K.!

My pain never improved, actually got worse post surgery as well as my bowel never really recovered, until recently, when I ended up with a mass amount of free fluid from another pelvic infection, which must’ve moved everything about! I’ve had in excess of 20 impactions.

I now a very complex cyst on left ovary, nodules of DIE in a few places, and now they’re wondering if the ovary is in fact malignant, so I’m booked in for hysterectomy plus oophoectomy (at least one ovary, possibly not the other) sometime in the next few weeks! Just awaiting one final MRI to go back to MDT then i should get my date!

I thought about getting a copy, but I’m pretty sure I won’t have a clue what any of it means... And then there’s, do those notes tell the whole story! I don’t think I was properly cleared of Endometriosis in my first surgery, as pain reared it’s ugly head before I’d even healed from it... My consultant seemed to have ‘expected’ it! He also ‘expected my bowel not to work’, but only told me this when I pointed it out! I’ve done Zoladex and combined pill back to back, over the last 4 years! Not really changed much! I’m so glad you found relief! There might be hope for me after this surgery! Xx

[Warriorpc in reply to Tillyfloss]

Never heard of the endo diet , will definitely look that up. They send me home with no pain relief whatsoever and now I can’t get threw to gp and am in so much pain

[Serenity202 in reply to Warriorpc]

Endo diet is basically everything that a vegan person eats. And you have to act like you have coeliac and Crohn’s disease. And also lactose intolerant.

I’m a sinner, I can’t do that. I still enjoy a glass of Coca Cola every now and then. And red meat. 🤪😋🤣

Red meat includes:

Beef,

Pork,

Lamb

And processed foods

If you eat a poultry meat that is processed, it will be considered red meat as well. 😬

That’s pretty much the endo diet.

[Hidden in reply to Tillyfloss]

Hi Tillyfloss, I'm interested to learn about the endo diet. Is there a book about it you're trying?

I've ordered a copy of the 4-week endometriosis diet plan by Katie Edmonds, and will start reading it soon.

[Tillyfloss in reply to Hidden]

Sorry for the delay I couldn’t find the thread, i’ll Send you the details of the two books I found helpful, one is quite a full on book with good explanation of why the changes are suggested the other is recipes to use. Xx

[Serenity202]

Oh bless you. There is no cure for endometriosis. It will always come back at certain point. You can treat endometriosis with hormones like progesterone or and pain killers. Surgery will only work for a short period.

Pregnancy also helps, because of the high level of progesterone in your body.

But the tricky part is when you deliver the baby, your endometriosis will come back worse or better than before your pregnancy.

I’m sorry you’ve been through all that. X

[Warriorpc in reply to Serenity202]

Am blessed with 3 beautiful children x so that’s family compete now. Ave been trying to ring my gp this morning but can’t get threw . Am hoping to be put on hormone pill . X

[Serenity202 in reply to Warriorpc]

Try progesterone only pill. It might help, since endometriosis is an oestrogen feeding disease.

[Serenity202 in reply to Warriorpc]

Did your endometriosis got better or worse after delivery? Mine got worse after. I also have 3 children.

[Warriorpc in reply to Serenity202]

Pain is definitely Worse ,youngest is 2 (3 in June) and I have definitely experienced more flare up the last 2 half years x