Been told by gynae I'm too old for endo but gp disagrees?

[Mindfullness4791]

I hope someone can help/advise please. I have been having severe abdo/gynae issues for a long time, but they have worsened in the past 12 months.

I am 48 and my gp thought it was Endometriosis as I am having bowel and bladder issues, linked to my cycle. The pain is so bad I nearly pass out.

I have seen gynae and although my scans were clear, she could feel 2 fibroids and said they were causing the issue. I am on Prostap and HRT. This helped for 2 months but now my symptoms have come back with a vengeance. The pain is unbearable and my bowel/bladder issues worse than ever. My whole abdo is on fire. Pins and needles/pain up and down my legs. Passing blood when I go to the toilet. Also, have wet myself I'm not having periods as a Mirena coil was fitted.

I've been signed off and my gp is almost certain it is classic Endometriosis. The specialist was adamant it couldn't be as I am too old. My gp disagrees with this. My appointment has been expedited.

I don't care what it is, I just want my life back.

Thanks for listening xx

[Moon_maiden]

Hi

I wish I could say you were too old but you aren’t. I was diagnosed at 51 in 2020. I’d obviously had it a lot longer but coped up until 2019 when things when haywire. It was diagnosed by Gynae at consultation and confirmed with lap a couple of months later, he was just as surprised. I’d gone to discuss fibroids.

You need an MRI, forget ultrasound, they need to check thoroughly, not just for Endo.

your GP is excellent and they need to pursue this for you. If you can afford to maybe see a different Gynae who is very experienced. I think I was very lucky with the one I picked, my GP surgery weren’t at all supportive.

Zoladex did nothing for me.

What pain killers do you have?

[nanomyous]

Hi. I was also diagnosed at 50. Like you, I had a supportive gp and had had numerous appointments and scans but couldn't get any further with the hospital doctors until I'd grown a large endometrioma.

I hope you get things sorted out in your upcoming appointment. If you don't, keep going as there is obviously something wrong. Good luck!

[PaintToughTed]

as others have said below, people have been diagnosed later than 48. My mother needed to have an ovarian cyst removed when she was 56, they did a laparoscopy to get them out. In the follow up notes they remarked that they seen still active endometriosis tissue, which given that she was some years menopausal was surprising.

This can still affect you for years to come so it’s definitely worth getting an answer for what’s causing you this pain. That the consultant you’ve seen has ruled you out based on age, i’d be asking for a referral to another gynaecologist, preferably an endo specialist for a second opinion.

[Starry1977]

I'm 46 in may and was diagnosed in may last year with stage 4 endo. Ademenoysis and severe adhesions. My bowel is stuck to my uterus. So you are definitely not too old. I didn't have any real symptoms until I was about 42/43 and even then they werent debilitating or regular. I just passed it off as perimenopause.

[Starry1977 in reply to Starry1977]

Just to add It only showed a 4cm cyst and a thick womb lining on ultrasound. Fune said no endo seen so unlikely to be that. I ended up going private and the lap showed alot of Endo and a further mri adhesions,more endo and ademenoysis.

[Avourneen]

That seems a weird thing to say. Some types of endo get more agressive after menopause and espcially on HRT. Also you are 48 you could have quite a few years to wait before your periods stop so you aren't menopausal or post menopausal anyway.

I would be very concerned that a gynaecologist came out with such clap trap, surprisingly and sadly there are quite a lot of qualified gynaes who don't know anything about endo. Although it could be being caused by somethingelse like adenomysiois or any number of things. An internal ultrasound should show up any endo but only f carried out by someome who knows what they are doing, a basic sonographer might not know how to reconise endo.

I would suggest, look up a proper specialist gynae and get a second opinion. You need to find out exactly what is causing the pain and not be fobbed off. Good luck...

[Shuggy11]

I’m 5e and was diagnosed with endo 2 years ago. Most medics I see say it can’t be endo. I’m not convinced it is. I agree with the others, if your GP is supportive, get tested. I was diagnosed during lockdown, in a 3 minute, Sunday morning telephone call from a consultant who didn’t even introduce himself. Since then I’ve only been given Cocodamol despite the pain spreading across my back and down my leg. Use your GP to get a proper diagnosis

[Wollatongreen6]

I was 58 when diagnosed with stage 4 endometriosis and adenomyosis so, no, you are not too old! Unusually, I was still not through the menopause hence the endo was still active. Thankfully , 9 months of prostap pushed me through menopause and it’s now “non active”. I suffered from the age of 12 and missed out on so much as a result. Earlier scans and a lap showed nothing! But finally finally I got my diagnosis😀. Do not give up!

[Pinky_37]

you need an MRI. You need to push for it. You’re not too old!!!!!!

[Mindfullness4791]

Thank you so much for all of your comments. I knew I'd get answers from the lovely ladies on here.

I definitely need to be investigated properly. I think the Fibroids have put my consultant on the wrong track. I probably have both. I am going to go to the appointment armed with information and insist I have a lap and mri, as this has been going on top long and I need to find out what it is.

It definitely flared up after adding hrt with the Prostap treatment.

I'm just so tired. Tired with the Prostap treatment and being in pain all of the time. My heat pad has become my best friend.

I am taking co-codamol 30/500 but am so constipated. Naproxen didn't do a thing. What do you all take?

Thanks again for the support. It means a lot, as it can be quite a lonely place to be xx

[Moon_maiden in reply to Mindfullness4791]

Hi

I think the best painkillers are Diclofenac suppositories, Oramorph, Duloxitine, plus cannabis but that’s on private prescription only, spare pennies have run out now for that.

GP’s can do much better that you’ve received on prescription so far.

Good luck, let us know how you get on 🙂

[primrose81]

Sorry to hear you are so poorly. Do so hope they can do something for you. I too suffered with endometriosis for a long time - I thought the excruciating pain every month was normal and was only diagnosed during caesarean for 1st child. I had my ovaries removed 6 years ago because of cysts, I was 68 when they were removed so hope they can remove yours too.

[Mindfullness4791]

Thank you so much. The amount of pain I am in, is scaring me. I'm just about to have,another!, hot bath and then put my head pad on. It's the only time I have full relief

It feels like both my bowel and cervix are inflamed? Is that how it normally presents?

[CryBaby91 in reply to Mindfullness4791]

There isn't really a "normal" way this disease presents itself. We all can have drastically different experiences, and someone with the highest stage could have barely any pain where as someone low stage could have unbearable pain. It's very personal, and sometimes can be an indication of where the disease is (like it pressing on certain nerves or organs). I would say if you are having symptoms of bowel or bladder issues then please please please 🙏 see a proper endometriosis specialist. Not someone with a "special interest" but an actual specialist with a multidisciplinary team. I went to a BSGE centre and felt confident at first, but he's not been very thorough and not checked my bowel or my upper stomach issues. Now I'm less than a year since my lap and all my pain is back with a vengeance, I have a diagnosis but still in the same crap situation lol.

Sending love and hugs!

[CCWildSwimmer]

Hi and I am so sorry that you are feeling this way and being dismissed by medical professionals. I am glad that your gp is being supportive however.

I am nearly 38 and for 25 years have had endo symptoms, Hugh have been misdiagnosed several times. I know have deep rectovaginal endometriosis and have had to have a hysterectomy as a result with worrying implications for my bowel. When will medical professionals learn that they need to listen and help women???

I hope that you manage to get the relevant treatment asap and sending lots of love in the meantime x

[Mindfullness4791]

Thank you so much for your lovely messages. It makes me sad, reading what you have all been through How do I find an Endo specialist? Xxx

[nanomyous in reply to Mindfullness4791]

Hi. If you look on the bsge website under centres (bsge.org.uk), you can see the specialists listed at each of the accredited and provisional endometriosis centres around the country.

[AlexaMac]

Hi l am astonished you have been told you are to old for endo, l am 76 and had a partial hysterectomy for the reason in December, March 24th l am in surgery again for completion of hysterectomy due to 9mm endo and unfortunately a carcenoma which is attached to the inside of my womb.

So to say you are to old at your age seems totally ridiculous, hope you get your doctor on your side and he/she fights your corner for you, stay strong, and ask me anything you think might help, Alexa xx

[Slinks]

I'm 46 and perimenopause and all my problems started about 2 years ago. I too am in pain like this and they keep dismissing endo but I'm convinced I have it. The pain is also getting worse and when it comes to my period nearly unbearable. I'm.not on HRT as I seem to have too many side effects from estrogen. Gyne said not endo but nurse said could be. Had 2 ultrasounds and nothing found. I don't have trouble with my bowels and bladder though. It's tough isn't it

[Mindfullness4791]

Alexamac - I'm so sorry to hear what you have been through They shouldn't rule anything out with age! It is so frustrating when we are in the middle of it all.Slinks - you need a laparscopy (sp). That's the only way they can really tell, I believe xx

[AlexaMac in reply to Mindfullness4791]

hi thank you, think we have crossed wires, l was replying to a query in endo. I have had 2 lap surgeries in the past 4 months first for cyst, ovaries and fallopian tubes to be removed, then 2 weeks ago had lap to complete the hysterectomy due to a tumour in my womb and also endo which was mis measured at 1’9mm when it was in fact 19mm. I am home now and recuperating, there is to be an investigation into my case as the endo was 10 times that which was recorded.

But thank you for taking an interest in my situation, Alexa 🌸🌸🌸