I just feel so hopeless

[Nm1993]

Bleeding won't stop, I've had tests. It's been years, I have no answer. Is it endo, is it adeno? Dunno.Bleeding for 10+days then I've a period. Thyroid checked slightly low, but nothings done. B12 deficiency, was on folic acid. I just can't take it anymore. I just need an answer. What's wrong with me body

[AllthatGlitters]

I have a terrible time with bleeding once bled for a year and a half constantly, non-stop and I have endo and adenomyosis.

Only thing that helped was 2 endometrial ablations then I had to have a blood transfusion and 2 iron infusions.

Have you been tested for adenomyosis via MRI scan?

Menefemic acid seems to help some people too xx

[Nm1993 in reply to AllthatGlitters]

My GP had referred me for an MRI but they refused to do it and sent back a letter of refusal. I'm just so sick of this. The constant heaviness in my pelvis and the bleeding, it really makes my anxiety so worse. I just want an answer 🥺 I just can't live like this anymore.

[AllthatGlitters in reply to Nm1993]

I know how you feel. It’s horrendous. Why did they refuse? X

[Nm1993 in reply to AllthatGlitters]

I can't really remember, but it was along the lines of "isn't a good diagnostic tool for endometriosis" and adenmyosis was never discussed. As I've only come across it recently myself. I have a GP appointment tomorrow and I hope i can get proper support

[AllthatGlitters in reply to Nm1993]

good luck I hope they pay attention to your concerns and you can get it sorted 💜

[Avourneen]

You could just go private and get a good internal ultrasound or an MRI. You can probably get it priavtely without a GP referral, or wait for and NHS referral for MRI etc. But that will probably take ages, I had to go to the GP and say you have to refer me and be really pushy. They won't do much to help unless really pushed then they sent me to a rubbish gynae who didn't scan me properly and who did a very bad op doing ablation when i needed excision. If you can pay for a scan privately it will save you about a year of faffing about and you can still get an op on the NHS. MRI is the gold standard fordiagnosis of endo and adeno, please don't go anywhere near a surgeon who suggests operating without a scan. Use your fed up ness and get really angry , go down to the GP and insist.

Good luck

[BloomingMarvellous]

Really do go private if you can possibly manage it for MRI to a specialist MRI unit that deals with endo and Adenomyosis and you’ll not regret it.

[Nm1993 in reply to BloomingMarvellous]

If I could, I'd have already gone private. It just isn't an option at all right now.

[BloomingMarvellous in reply to Nm1993]

that’s bloody tough and totally feel for you - Some of the women on here know the NHS routes and centres that giving to your GP might result in more success.

[Rainbow2468]

I think it's absolutely ridiculous how we are treated to be honest. Have they not suggested noresthisterone at least thus us not only a treatment for heavy bleeding but endemetriosis too. I have seen a gynecologist who because I refused a hysterectomy it isn't a cure for endemetriosis. Is going to say to my GP not to give me this medication even though it's working for my heavy bleeding. I have not had an mri only a colposcopy, hysteroscopy and internal scans. I have signs of endometriosis, cysts, two fibroids and adenomyosis. To say I'm angry is an understatement why do they not listen to us. 😡 Sending you a big hug x

[Nm1993 in reply to Rainbow2468]

Thankyou, it's really just so upsetting and it makes you feel like you're hysterical but I'm so concerned about my health and I've been trying so hard to lose weight and its just not happening. I just feel so frustrated and overwhelmed. We pay into the NHS and I recognise that it's under a lot of pressure but the fact that we have to fight for support or treatment isn't anything new and its not right.

[Rainbow2468 in reply to Nm1993]

I totally agree with you. I understand the nhs is under pressure. But we should be at least listened to. Sending you a big hug ❤️

[635703]

so much love, this is horrid!! I hope you find answers lovely x x x

[JulesUK]

it’s your body. I learnt that you have to almost demand what you want. It’s truly awful that it’s that way but it is. Go in and tell the doctor what you require no question. I genuinely think they prefer it if patients go in and just tell them saves them having to try and diagnose and consider options. Whoever my husband asks me if I am going to the doctors my response is usually “no because I haven’t decided what it is I want them to do yet”. In 5/10/20 years time if you are still suffering the doctor won’t remember you. You have to take control of your treatment. This isn’t a swipe at Doctors btw I’m sure they work hard but they have thousands of patients and about five minutes of time. Tell him it’s not acceptable and this bleeding is NOT normal. Tell the doctor you need an internal annd external ultra sound as first line investigation. Good luck. (Sorry for the tone I sometimes get so frustrated that we still aren’t being taken seriously and given the treatment we are entitled to). Best wishes x

[Rewe]

Hi there, just a quick note to say I'm very sorry to hear what you're going through and I understand how hopeless and helpless things can get. Not sure if you've ever tried this but the people on the endo helpline are so supportive and knowledgeable. The number is 0808 808 2227. They aren't open all the time but there's a website with the times endometriosis-uk.org/helplineI hope you get some answers and proper medical care soon. I think the consensus is to keep asking for second opinions and seeing different doctors until you get one who takes you seriously. On a side note I had a private ultrasound which was how I got endometriomas diagnosed. It was an external ultrasound but the sonographer was just excellent. I'd never had any results from other US scans. I know it's expensive but I think if I were in your position I'd try and get a private MRI even if it takes a while to save up for it ... but appreciate it isn't an option for you at the mo. Sending hugs xxx

[MandaBunny]

Hey there

I have endometriosis and used to bleed for 10 days. It was debilitating.

The only thing that stopped the bleeding was the merina coil.

It was inserted during laparoscopy and have had no bleeding at all since.

I still have pain though 😩

It's really worth considering.

Xxx

[Koala_bear89]

Hi, so sorry to hear this. I am in the same boat I only have like 2 days off rest of time it’s constant bleeding. Working from home more as so tired and fatigued and have back pain.

Be persistent as I am getting an MRI in March and its my third referral to a Gynaecologist. I was crying in my GP as they could not do a routine smear (successfully had one in 2018) now it’s too painful so I used that as another plea. Cannot use any size tampon now either too painful so it’s impacting me now.

I had an external ultrasound showed nothing and as I could not have an internal one (radiologist did not want to risk the potential pain) that’s when they said MRI. I hoping this shows endo and adenomysis. I have very low iron levels and iron tablets just don’t cut it so I’m booked for an iron transfusion also.

You will get there just so unfortunate that we have to fight to really show our bodies are not right.

I am also going to see if they are correct in what they say as they have told me going on the pro strap injection would completely stop the bleeding but as mine is so bad I am not so sure but I need to try it and see. Bear in mind all bodies are different so what works for one doesn’t work for all.

Fingers and toes crossed you get the help you need. Xx