Worried it's all in my head

I've been writing up my symptoms ready to tell the specialist in October and it's made me realise that the pain only seems to have got worse since the gynaeo mentioned it last April and since changing my pills for the first time.

I've had a lot of mental health issues, and was told by the doctors that my persistant stomach ache was probably anxiety (which I accepted at the time but now I'm thinking it might have been endo?) so I'm thinking that the pain might all be in my head, it genuinely noticeably get worse in a period of time? I've had heavy periods since they started and pain during sex and after before I knew what endo was, and all the symptoms since now I'm aware of them.

I don't think I could handle being told the pain is psychological but also scared at the fact I might be able to imagine pain this bad!

[Starry]

It's not in your head XXX painful sex is a classic sign and as you say you experienced the symptoms before you discovered the probable cause. Trust your instincts. You know your body best.

[Hidden in reply to Starry]

Yeah, I was also diagnosed with vaginismus which the gynaeo said was the root of painful sex, it feels like they have an explanation for every symptom, it's so frustrating x

[MsDiagnosed in reply to Hidden]

After a non-exhistant sex life for the last 10 years due to intense pain and increasingly painful smears over that period of time the gynaecologist recommended psycho-sexual counselling. Fast forward 1 year and after an emergency admission to hospital and an mri scan I have the diagnosis of stage 4 endo - my new gynae couldn't be nicer (specialist at BSGE centre). i feel the specialist gynae listened more - and was able to diagnose correctly.

[Starry in reply to Hidden]

Hormone issues, which are at the root of Endo can be a cause of emotional anxiety and mental health problems. It's not uncommon to have them and Endo.

I've had depression and anxiety since my teen years possibly due to the contraceptive pill plus adverse life experiences. But I still also have severe RV Endo.

I would push for GP to refer you to a different gynae if they are dismissing the Endo possibility without due consideration.

Do you have any bowel symptoms? Or is it mostly uterine ( painful periods etc)

[Hidden in reply to Starry]

Lots of bowel issues which they told me was probably ibs, tho I cut out gluten and dairy a long time ago which eased my stomach pain but not my bowels ;/

[Starry in reply to Hidden]

Then you likely have RV Endo so can ask for a referral to a specialist BSGE accredited Endo centre where you actually have a decent chance of a diagnosis. Deep RV bowel Endo must be treated at BSGE centre according to the NHS contract so you can take the contract to your GP with your list of symptom and not take no for an answer.

google.co.uk/url?sa=t&sourc...

Page 6

"Laparoscopic surgery for deeply infiltrating endometriosis or for recto-vaginal endometriosis

is considered to be a specialised service due to its complexity and high risk of morbidity. The

British Society for Gynaecological Endoscopy has established criteria

(bsge.org.uk/ec-requirements... for

centres carrying out such work and accredits departments that reach its standards. The

criteria include:

 Working in a multi-disciplinary team with a named colorectal surgeon and nurse

specialist

 Holding a dedicated endometriosis clinic

 Operating on a minimum number of patients with severe endometriosis each year

 Submitting operative and quality of life outcome data to a national database

 Audit their outcomes

These criteria are designed to ensure quality care to women with complex surgical needs to

minimise the risk of surgical complication and maximise the opportunity to deliver the best

outcomes. Effective experienced care such as this will reduce the cost to the taxpayer by

reducing the current experience of multiple less adequate procedures, long-term medication,

multiple hospital investigations and recurrent admissions.

Referral

Patients with known severe disease, which has not been adequately treated or has recurred,

are likely to be referred by primary care clinicians. Gynaecologists in secondary care, who

identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or

open surgery, will refer patients from secondary care to an Endometriosis centre.

Laparoscopic images and or video, of suitable quality and format will be included with the

referral wherever they are available as this may prevent the need for repeat laparoscopic

pelvic survey after referral.

"

[Starry in reply to Hidden]

Then you likely have RV Endo so can ask for a referral to a specialist BSGE accredited Endo centre where you actually have a decent chance of a diagnosis. Deep RV bowel Endo must be treated at BSGE centre according to the NHS contract so you can take the contract to your GP with your list of symptom and not take no for an answer.

google.co.uk/url?sa=t&sourc...

Page 6

"Laparoscopic surgery for deeply infiltrating endometriosis or for recto-vaginal endometriosis

is considered to be a specialised service due to its complexity and high risk of morbidity. The

British Society for Gynaecological Endoscopy has established criteria

(bsge.org.uk/ec-requirements... for

centres carrying out such work and accredits departments that reach its standards. The

criteria include:

 Working in a multi-disciplinary team with a named colorectal surgeon and nurse

specialist

 Holding a dedicated endometriosis clinic

 Operating on a minimum number of patients with severe endometriosis each year

 Submitting operative and quality of life outcome data to a national database

 Audit their outcomes

These criteria are designed to ensure quality care to women with complex surgical needs to

minimise the risk of surgical complication and maximise the opportunity to deliver the best

outcomes. Effective experienced care such as this will reduce the cost to the taxpayer by

reducing the current experience of multiple less adequate procedures, long-term medication,

multiple hospital investigations and recurrent admissions.

Referral

Patients with known severe disease, which has not been adequately treated or has recurred,

are likely to be referred by primary care clinicians. Gynaecologists in secondary care, who

identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or

open surgery, will refer patients from secondary care to an Endometriosis centre.

Laparoscopic images and or video, of suitable quality and format will be included with the

referral wherever they are available as this may prevent the need for repeat laparoscopic

pelvic survey after referral.

"

[Hidden in reply to Starry]

Yeah I'm going to the bsge centre in Birmingham in October, just paranoid they wouldn't find anything because I've read a lot about other people who've been in a lot of pain and nothing has been found. The gynaeo has turned my down for a Lap for years saying I'm too young and it would be easier to wait til I wanted kids but tbh I just want answers

[Starry]

If you have RV I would agree. I narrowly escaped needing a bowel resection as it was starting to infiltrate my bowel wall lining. I am 42 though and it's likely to have been present from birth so in fairness took a long time to get so bad.

The difficulty and dilemma is that surgery can cause additional adhesions which is one of the causes of Endo pain so you can get trapped in a catch 22 situation so that is why the reluctance to do early surgery of it can be avoided but if it's not responding to hormone treatment like the pill (and RV Endo is believed to often be hormone resistant and able to produce its own estrogen ) then a lap to know what you are dealing with is a good idea to know your organs are not at risk. Remember surgery äis not a silver bullet though.