How to get diagnosis

[Sophhh]

Hiya

I’ve been struggling for almost 10 years with severe IBS symptoms, severe heavy painful periods, pain and bleeding mid-cycle, severe excruciating pain when exercising, but the past year it has got worse to the point I’m struggling to stand up.

I’ve visited the GP over 7 times on the same topic, I’ve had ultra sound and hysteroscopy but no doctors have offered me the laparoscopy to officially diagnose endo

My most recent experience the doctor told me there’s no point getting a diagnosis because the treatment would be the same regardless (ie hormonal)

I really really don’t want to take the pill, or other hormonal contraception. I’m worried it will negatively affect my mental health, as I’m already struggling.

How can I get a diagnosis? Does anybody have any advice how to get a laparoscopy ? It is so important to me to know what is going on with my body and how I want to treat it.

[Angellouise]

Do you have a gynaecologist? You need one to get a lap. I wish you luck

[Sophhh in reply to Angellouise]

No I don’t have a gynaecologist- would I need to access privately? As my GP will not refer me

[Angellouise in reply to Sophhh]

Here in Canada I would go to another GP to get a referral

[EndoSuckss]

You need to ask your GP for a referral to a gynocologist. Once referred and you have your initial appointment, you'll discuss your symptoms and likely be offered a laparoscopy. Good luck

[Sophhh in reply to EndoSuckss]

Thank you, but my GP will not refer me, or investigate unless I take hormonal contraception. Is this usually the case?

[EndoSuckss in reply to Sophhh]

I have no idea if that's usually the case - I wasn't on any hormonal contraception when I was first referred/diagnosed (although I was on the mirina coil when I was referred back for a further lap a few years after diagnosis).

But, my view, you shouldnt effectively held hostage to be referred to a specialist. I would see another GP in the surgery and ask, and ask that your request if specifically noted on your records alongside their reasons for refusal if you're told no again.

[Rock-Cat]

If you have the money or private medical insurance you can ask GP for private referral to gynaecologist. The only way to diagnose is through laparoscopy. I just had mine done privately and the consultant was an endometriosis specialist who excised my endometriosis during the laparoscopy so treatment and diagnosis in one. Sadly the NHS waiting list where I am is horrendous. I was in chronic pain every day and could barely walk for the last 6 months but can't get NHS gynaecologist appointment until May 2022 (referral went in June 2021 and may appointment is just a phone consultation!) I now know through having laparoscopy that my endo was around my nerves and my bowel. I've also had bowel trouble and nightmare periods for 10+ years and repeatedly told nothing was wrong. Persistence with NHS GPs for referral to endometriosis clinic or gynaecologist or going private is the only way to get laparoscopy and ultimately a diagnosis. I hope that helps a little, good luck.

[Sophhh in reply to Rock-Cat]

Thank you for the reply and advice, I’m glad you got the help you needed. In what sort of ballpark do people pay for private gynaecologist services? I’ve never really looked in to it. Thanks

[Justine89]

I suffered the same for years and years I believed I had IBS as that what I was told by my gp. I also suffer extreme period pains that was dismissed. I moved so I changed doctors and went to see my new doctor who instantly said nope endometriosis so she referred me I had my laparoscopy in October and I have serve endo which is also affecting my bowel. I tried the pill which made me bleed every day.

[Lindle]

I am so sorry Sophhh . We hear so many GPs telling women these things and this is directly responsible for the long delays in diagnosis.

Endo progresses and the treatment is absolutely not the same regardless of whether you have a diagnosis or not. This GP is working totally against NHS regulations.

Medical treatment is only for mild endo and it is well known that masking the progression with the pill is a direct risk factor for developing more severe endo down the line and medical treatment is not effective once that has become established.

It's not just about having a laparoscopy either. First of all you need to identify if your symptoms are suggestive of more deep disease which might be problems/pain/bleeding with pooing, bladder issues, lower back pain, referred leg pain (usually but not always the left), problems sitting (shooting pains up bottom/vagina), problems standing/walking as well as the usual generalised abdominal/pelvic pain, bloating and perhaps period related issues.

If you should have these sorts of symptoms then you need to see a specialist in endo who knows how to diagnose deep disease which involves a very thorough clinical exam and expert scans before a lap is done. This can all be arranged privately. Please message me if you want any more help with this. x

[JayBee2021]

Not sure whether you are in the UK or not but you definately need to get a second opinion , and need a referral to a gynae specialist . I'm am no doctor but I have had Endometriosis , a Hysterectomy , Abdominal adhesions and suffer with IBS and treating it with hormones is not the only answer available and you should not be told that it is . If you choose not to accept that route then that is your decision . You know your body better than any doctor . You need to get scans done and for someone to listen , and you should not have to pay to get this treatment . It is unfortunate that some GPS dont take this seriously . If I was you I'd go see any GP at your surgery . I wonder if the doctor who told you this was a male? if so maybe worth asking to see a female gp . Stand firm and ask for a referral to a Gynae Specialist . In fact I read on my local gps website that you dont need to see a GP to get a referral that you can do it yourself online . I'm not sure if this is only in certain circumstances but it might be worth looking into . If you are in the UK , have a look on the NHS website. I thought even if you went private you still had to get a letter of referral from your GP.