Endometriosis

[lostsoul1989]

I have just had a phone call from the hospital that I have Endometriosis.

Which could describe the pain I am in!

Has anyone else had this? And what happens next?

See you GP for a prescription for appropriate pain relief (mefenamic acid). Then it's just a case of trying to managed symptoms, so if pain killers are enough to help you deal with the pain then there is not a huge amount of point having surgery, however if pain can't be managed properly or infertility is an issue then you might need a referral for surgery.

Also worth taking to GP about using hormonal contraception (Mirena coil) to managed your periods and therefore the endometriosis symptoms. I unfortunately get mental health side effects from hormonal contraception so have avoided this route so far.

Well they put me on the Mirena and my mental health has gone to pot.

They were treating me for menapause

Sorry to hear that.
I have stage 4 endometriosis (plus other things).
One thing to know is where is the endometriosis? If it’s in the bowel and bladder then you should be referred to a BSGE centre for investigations. Worst case they can affect these organs.

Endometriosis is a progressive disease so it is worth proactively managing it IMO. I had excision surgery (keyhole) with a great surgeon who removed the endometriosis and I was a lot better afterwards.

Hormonal treatment is also offered eg mirena or the pill. For me and it is a personal decision the pill was not able to mask the severe pain - although it did in my 20s, but over time more endo grew making my symptoms worse.

Endometriosis is thought to be an inflammatory condition so reducing dietary forms of inflammation should help. Eg when I drank alcohol it would set off a severe flare up.

Best of luck x

Get the mirena removed. It's progesterone which is really bad for so many women's mental health.

You need to see a gynae and request excision surgery NOT laser because laser is just superficial. I would do that instead of relying on painkillers long term because they'll suggest NSAIDS like ibuprofen which are terrible for your stomach long term. Google the endometriosis diet too, I had hormonal treatment (made me so depressed), treatment which made me menopausal (made me feel like shit), laser surgery (I was pain free for 4 weeks), excision surgery (pain free for 3 years) and follow the endo diet (has kept my pain to levels I can cope with for about 9 years).

It is really overwhelming when you first get the diagnosis so take your time researching what you think will work best for you

Also definitely get some good pain relief from GP- naproxen (ask for something to protect your stomach form this though) and also codeine can be good too.

Hi it's from the gynae I got the diagnoses! So just waiting for another appointment

How was your diagnosis determined (via laparoscopy?).

This is also a helpful website:-

www.endometriosis-uk.org/

Had some biopsy's done, which was painful as hell

Read Atilla's link, get informed, work out what you want for you. I was diagnosed 20 years ago and treatment can also depend where you are in life ie age and whether or not you have had children/want children/finished having children. I was 27 when diagnosed.

If you read the list of treatments on the endo site I did all stages except Danazol as I wasn't prepared to put my body through that. My endo was described as "aggressive" and the laparoscopy confirmed where it was which I already knew from the pain.

Read up on diet choices, I also overhauled my attitude to the pain and meditated to be less stressed. I was very fortunate that I was able to quit work as the fatigue after having Ds1 at 29 and juggling work was horrendous. I have been a SAHM ever since.

Following as our 16 year old DD has been advised by her consultant she has endometriosis. She hasn't had a laparoscopy yet as the consultant didn't want her in last April having an unnecessary procedure during Covid when she said it would only confirm the diagnosis. At present she's taking the pill (Gedarel) back to back which has helped but having big flare ups and two/three days off school at a time.

Oh I am so sorry to hear that?

I am in agony for 2 weeks of the month.

I hope she gets better

I know I am late to this but how is endo diagnosed without laparoscopy? I have a gynae appointment tomorrow

@Lostandtired1 the standard way is the laparoscopy but NHS wise they will try any and all other methods before this because of cost; medicine is cheaper than surgery. Secondly, adhesions are likely when making incisions for not just the laprascope but the 2 lower incisions for the instruments to move internal tissue around or lift organs etc.

I have only read it on here but I believe they have diagnosed endo from an ultrasound by an endo ultrasound specialist or from a biopsy taken. I had an ultrasound and all they could see were the cysts but no endo deposits however the laparoscopy showed I had a lot of scar tissue, none of which was mentioned as being picked up on the ultrasound.

@mummabear74 awful that your DD is so young, I was about 15 when I knew something was really wrong with my period pain. Which dose of Gederal is she on? There is a low dose version and a higher one so she may be able to try another Gederal product or change to a different one to see if that alleviates the flare ups if that is what she wants.

[quote NotATreacleTart]@Lostandtired1 the standard way is the laparoscopy but NHS wise they will try any and all other methods before this because of cost; medicine is cheaper than surgery. Secondly, adhesions are likely when making incisions for not just the laprascope but the 2 lower incisions for the instruments to move internal tissue around or lift organs etc.

I have only read it on here but I believe they have diagnosed endo from an ultrasound by an endo ultrasound specialist or from a biopsy taken. I had an ultrasound and all they could see were the cysts but no endo deposits however the laparoscopy showed I had a lot of scar tissue, none of which was mentioned as being picked up on the ultrasound.

@mummabear74 awful that your DD is so young, I was about 15 when I knew something was really wrong with my period pain. Which dose of Gederal is she on? There is a low dose version and a higher one so she may be able to try another Gederal product or change to a different one to see if that alleviates the flare ups if that is what she wants.[/quote]
Thank you, I have had an transvaginal ultrasound which they said was normal and couldn't see anything abnormal.
I had and ectopic in around 2010 and they said at the time my tube was covered in scar tissue but that was it. I have had a child since then. I'm putting my painful heavy periods down to it and would like to know if I have it or if there is no underlying cause before I decide whether to have an ablation or not (I'm 41).

If you can stick with the Mirena. I had stage 4 diagnosed in my late 20s after 8 yrs of horrendous pain and bleeding. Had 3 lots of surgery and drug treatment. After a long haul fertility journey I had DH and then had Mirena fitted. The last 15 yrs have been life changing. I so wish it had been available 30yrs ago!!!

LostandTired

re your comment:-
"Thank you, I have had an transvaginal ultrasound which they said was normal and couldn't see anything abnormal""

Endometriosis is not picked up on internal ultrasound scans. I can personally attest to that fact!.

I would have detailed discussions with a gynae regarding the suitability of ablation surgery if endometriosis is present.