Endo and Ando what to do now?

[Citrusheights79]

Hi everyone

I hope you’re all ok. Can I have some advice please?

I finally had an MRI scan in January, after suspecting for decades I have endo. I’m on HRT for the Peri Menopause and Tranzamic Acid, for heavy bleeding. They do help.

The scan was in January and I never got any results, which shocked me. I had a HRT review and the nurse checked a system only medical staff can view, that isn’t linked to the NHS app. She said the scan showed I have endo and ando. The gyno already said he was pretty sure I had both.

I’ve called the hospital 3 times. They said they have a backlog and I just had to wait. I’ve now been told I’m on a waiting list for a phone appointment but they’ve no idea how many months that will be. The gyno has already told me he isn’t trained in Endo or Ando, so he’d have to refer me on.

I’m so frustrated as this has been ongoing since I was 14 for 31 years. It’s been left so long I worry what it’s done to my body. For decades I took no medication at all and just left it all.

Does anyone know what I can do to find out how bad it is and what stage it is? I’m guessing I can ask the gyno to refer me to an endo specialist and then beg for a laparoscopy but I’ve had to fight for years to get this far and I’m tired now. I’m really worried they’ll just leave it all and it will ruin the inside of my body. Or can an MRI scan show the stage and severity?

Any advice would be so welcome.

Thanks Helen

[Sunset-lady]

I had a similar situation as I had an MRI in July 2024 and didnt get the results until 20th December 2024. The MRI had been reviewed by a specialist but then they kept cancelling clinics. It's very frustrating as they refused to give me the results. They did say that my GP could access them though and I should see them but when I did they couldn't get the results either. My advice: make a nuisance of yourself. Ring the secretary of the consultant and keep pushing for an appointment. Once you see them ask to be referred to a BSGE endometriosis centre. You could go private at this point and see the endometriosis specialist sooner but you'll need to take your MRI results. Then the specialist can put you on a treatment plan whilst you are waiting to be referred to him on the NHS. This can speed up the process a little but you can't jump the NHS queue (obviously). I was 50 when I was diagnosed- it's heartbreaking 💔 when I think of my younger self and how I struggled I'm amazed at what I went through. Keep pushing xxx

[Sunset-lady in reply to Sunset-lady]

And yes, it should show all the endometriosis- mine did. Particularly if it's stage 4 like me and everything is fused together. Once you get in front of a proper endometriosis team it's a different world. I'm having a complex hysterectomy this week. My gynae team tried to do a hysterectomy and found endo so left it. You need specialist surgeons to do it. Good luck x

[Citrusheights79 in reply to Sunset-lady]

Thanks so much. Your reply is so helpful. I will take your advice. I’m so sorry you’ve been through all this. I hope the surgery helps you. Xxx

[Stressedoutwoman in reply to Sunset-lady]

Hi how old are you if you don’t mind me asking I’m really suffering at min been on hrt two years and everything just feels like it’s come back I asked for hysterectomy and was also told no to complicated I’m 60

I’ve just come off hrt in the hope it will sort stuff out but I’m not sure it will I had terrible endo and had ivf to have my son as my ovaries where glued up but nothings been checked for 25 years currently back at doctors and having transvaginal scan this week to make sure not ovary or fibroids causing pain

[Sunset-lady in reply to Stressedoutwoman]

Hi, I'm 52 next month. They'd like me to "just go through menopause" but it could take years and my consultant believes that I'll always bleed with HRT. A hysterectomy doesn't stop endometriosis growing though as the disease unbelievably makes its own estrogen. I will never be able to take much estrogen and I'll always have to take natural utrogestan (is this what you are on?). I have recently read Lara Briden's books on hormones and found it very helpful. Xxx 60 is not old and a specialist endometriosis BSGE accredited team should be able to help you x

[Stressedoutwoman in reply to Sunset-lady]

I was on vital patches and utrogestan 100 mg but doctor said it will encourage growth so I’ve stopped it I’ve been on it 3 nearly 4 years I never bled in any of that time bleeding stopped at 54

I have terrible trouble with my bowels and back as well as pelvic pain it has limited me quite a bit over the years

If nothing on ultrasound I’m going to ask for a mri but I’m thinking they’ll fob me off

[Sunset-lady in reply to Stressedoutwoman]

I'd push for an MRI. I had a private MRI done as I wasn't prepared to wait. It cost around £700 but they found everything. I think you need a specialist team. Look up your nearest BSGE centre for endometriosis and ask to be referred. If they refuse there's something called "patient's choice" which states you can demand to be referred to any team you want - even in another part of the country! Don't let them fob you off. There's a good Facebook site run by some very well informed women Endometriosis Guidance and Information Resource UK. Go on there and ask about this and the two admin women (who are incredible) will answer you and point you in the right direction xx

[Citrusheights79 in reply to Stressedoutwoman]

I’m sorry to hear what you’re going through. That sounds awful. I’m 45 and in the peri menopause. I take body Identical HRT, which helps with menopause symptoms and pain. I take tranzamic acid to reduce my heavy periods. That’s so frustrating that they won’t let you have a hysterectomy. Its rubbish being a women in the NHS system. I keep thinking about giving up, as I’m sick of fighting but I won’t.

[CelesteStar]

Hello

That sounds incredibly frustrating to have been waiting for so long and to have no results given except because the nurse looked for you. That sounds really wrong and it’s no wonder you’re anxious and wondering what’s going on.

I hope the follow up comes any day now.

On a positive slant - the staging of endo doesn’t always correlate to the symptoms you experience. So it is very possible to have milder/more moderate endo but have a you’re severe symptoms. So in terms of worrying how bad it is, I’d focus primarily on the symptom management you need. Whilst you’re waiting definitely make sure you get support from your GP for this and I think it’s essential they offer you something until you have your appointment.

On the physical staging, I would imagine that despite the wait times, if they’d seen anything like large cysts or torsion (which can be an emergency) etc that you’d be pushed higher up the list. (Though to be honest how they’ve taken you for a scan but don’t have response to explain the answer is bonkers). I would try not to worry about the progression (though I too worry about this! 😉)

You need your energy to rest and avoid extra stress. But I wonder if there’s any way you could ‘complain’. Maybe not to criticise the hospital but to raise the fact that you are left with anxiety if you don’t even have results. I’m sure that’s a thing where doctors don’t want to offer unnecessary investigations sometimes due to the anxiety of waiting for results.

I understand health professionals won’t want to give results if they don’t know the ‘what next’ and so it has to be the gynae but if they’ve said you need to be referred on, can they not at least get that started for you?

Sorry this may not be a lot of help. There’s definitely things you can do to try to suppress the pain and endo even temporarily. Perhaps if they can give an indication of the likely timeline it might be possible to weigh up trying a hormonal regimen whilst you wait? I’d definitely ask for pain relief and anything you might need for other symptoms.

Hormone therapy isn’t for everyone and can take months to settle but it’s sometimes helpful to feel you are stopping periods which gives you a chance to suppress the spread depending on your own endo. Personally, though mine is painful, it is slow moving.

Hope you get some answers soon.

[Citrusheights79 in reply to CelesteStar]

Thanks so much. That’s a good idea about complaining.

I’m 45 and in the peri menopause. Since taking body identical HRT and Tranzamic Acid my symptoms are much reduced but it’s very random. The Ando seems to be worse than the Endo.

I can’t take hormonal medication as it doesn’t agree with me but the body identical HRT does agree with me.

What I’m worried about is that for decades I took no medication, so I’m worried that the diseases will really have messed up the inside of my body. So many people on this site talk about organs being fused together and that scares me. I’m pretty sure I’ve got endo on the bowel as I have all the symptoms. I was fobbed off for years. I was told it was just PMT and IBS.

I’m not sure there is a centre in Leeds but hopefully I can be referred to the nearest one. All I’m bothered about to be honest is that somebody checks the inside of my body to make sure all my organs are ok and there’s nothing too serious. If I ever have to stop the HRT though I’ll be screwed. It’s really helped my pain. I don’t know how but it has. The Tranzamic Acid has reduced the bleeding. The gyno told me the HRT would stop my periods but it didn’t.

It is anxiety provoking, because I’ve no idea what’s going on inside my body. It could be a right mess in there. Hopefully not though.

Thanks for your advice.