Can anyone share their experiences of being diagnosed with Endometriosis please?

[poutintrout]

Hi, the title probably says it all but I was wondering whether any of you ladies could share with me how you were diagnosed with Endo, what symptoms you had and what treatment you were offered and time frames.

I ask because I have a suspicion that I may have this problem and after much wrangling with two GPs and being made to feel like I was an idiot for suggesting it (despite bringing in printed out info on the subject) I have finally got a Gynae appointment. I have read a lot on the subject and am discouraged that it seems to be difficult to get this investigated & diagnosed and am afraid that I will be fobbed off at my appointment and will get no further forward.

I have also read that it is best not to mention TTC at appointments. I find this a bit odd seeing as my research indicates that in 60% of cases of unexplained infertility endo is the cause. We have been TTC for over 2 years & been slapped with the unexplained "diagnosis" and obviously the lack of baby is a big factor in me wanting to have endo investigated (though I also am struggling with the other aspects health wise) but I am torn as to whether to make much of this at my appointment.

Hope this makes sense. Any advice and experiences would be really appreciated.

Thanks!

Hi clementine

Thank you for your advice. It is scary how some GPs seem a bit clueless about it. The first GP I broached the subject with looked at me like I was an idiot for even suggesting that the symptoms I listed could be connected.

I had a referral some time ago and had the basic fertility work up but not a lap. I didn't realise that at the time I had inadvertently flagged up possible endo but TBH the registrar didn't seem interested in doing anything other than the basic fertility MOT & I was discharged with the unexplained label. I am just so paranoid that this is probably my last chance to get some answers (I'm 36) and am afraid that I will get another doctor who is dismissive.

Can I ask whether you had an HSG and whether this indicated any possible problem with your tubes?

Good luck with the IVF.

Hi OP.

I was diagnosed with endometriosis in December after more than a year of horrifying pains when I got my period and at other times during my cycle.

I actually came on MN when it first kicked off and endo was suggested as the cause on here. I went to my local Well Woman clinic and also got the explanation that it was within the 'normal realms' of period pains (I always doubted this, the pain was acute, I collapsed more than once when out with DS and had to sit on the ground in the street, literally unable to walk).

Eventually I saw a great locum GP who booked me in for scans which showed two cysts. I saw a gynae who said all my symptoms were classic endo, then had a laparoscopy which confirmed, and they removed the cysts.

I am still getting pains sadly, this surprised me because I thought once the cysts were gone that would be it, but the endometrial tissue can be all over the place within the pelvic region apparently and it's likely I will have continuted symptoms.

They've referred me to a specialist in July (!) and alongside that I will go to a pain clinic and get dietary advice as apparently there is a lot of research atm in this area wrt managing symptoms by dietary changes eg cutting out wheat (interestingly I was strictly wheat-free for a long time and never had symptoms, this all kicked off after I let my healthy eating slide).

I take Co-codamol for the pain as it's the only thing to touch it, and have been prescribed a strong ibuprofen type thing which I haven't tried yet. They also fitted a Mirena coil during my lap, it contains progesterone (sp?) and apparently is the current best way of controlling endo which my gynae described as an 'unrelenting' condition.

If I were you I would keep pushing for specialist referral as GPs aren't experts in anything this. Also it seems your fertility consultants are not aware of/interested in the possible endo side of things - maybe pursue the two issues separately.

I haven't had personal experience of endo however one of my closest friends has.

She went back & forth to her gp for years with symptoms. Was fobbed off with the usual 'well periods can be painful/ heavy' etc.

Eventually the pain was so back she collapsed, taken to a&e. Upon investigation her endo was so bad it had damaged her bowel & tubes.

She does have a child now through ivf but continues to suffer with endo even after numerous ops.

Her case is obviously a very serious one & not everyone is affected so badly. I really don't want to sound over dramatic. Just to say though do not allow yourself to be fobbed off or intimidated by gps etc. Push for a proper investigation. Had my friend continued to be undiagnosed she would have had to have a colostomy bag.

Hope you get to resolve your symptoms quickly & ttc is successful. Keep pushing for answers.

tamoo I'm sorry that you have been through the mill.
My period pains aren't so bad that I can't walk but they are bad enough so as not to go away with painkillers. I find a cocktail of Solpadeine and Ibubrofen is the only thing that takes the edge off the pains. I can't believe that you were told the pain was within normal ranges.

The diet is interesting. I do eat a lot of wheat.

Bunsouttheoven I'm sorry to hear about your friend but thank goodness she eventually got a diagnosis and didn't have to have a colostomy bag.
It is the bowel symptoms and the acceleration of these problems in the last 6 months that are really worrying me. Though I have other non-bowel symptoms too the doctors seem to just want to focus on my bowel and investigate that in isolation. It is just so frustrating when I have pieced most of my medical history together and come up with a reasonable assumption/diagnosis but yet they refuse to entertain it and won't even read the information I presented them with and just argued with me. I have to admit that I did eventually get a gynae referral more because of the TTC I think but my GP refused to specify suspected endo in the referral which I feel would have made my referral easier.

Apparently it takes around 8 years of pain and discomfort before endometriosis is diagnosed and by then damage has been caused to the reproductive organs!

Hi Pout, I also had a 'diagnosis' of unexplained I fertility, I'd had blood tests, scans, HSG everything was normal, husbands SA normal, I had self referred privately a didn't want to wait, anyway swapped consultants and first thing he wanted to do was a lap and hyst and sure endo he found and treated endo, and 3 weeks later I was pregnant with my son.

Do you have private health insurance ? If so I wouldn't mention the fertility thing to your GP and ask for a private referral to an endo specialist, they can't refuse you a referral, I'm not sure how it works on NHS though, would imagine you need a sympathetic GP to refer you.

Best of luck x

ou are right to push for further investigation; unexplained infertility is actually no diagnosis at all. What this means is that they have failed to find out what is wrong. It is sometimes given to patients when the couple has been inadequately investigated.

I have had endo since starting menses at 14 (I realise that now) but at the time it just was not recognised by anybody medical and my mother had no idea what was wrong with me.

My main symptoms were heaviness of period, brown (old) blood like brown stingey bits and pain (oh the pain); pelvic pain, rectal pain, pain down both legs (sciatic nerve). Also had stomach pains to boot (endo can get onto the intestines and I remain convinced that some but not all women who get diagnosed with IBS actually have endo instead). All these are actually classic symptoms of endometriosis.

The four classic symptoms of endo are:-
painful periods
deep pain during sex
pelvic pain (continuous or cyclical)
subfertility

Other symptoms may include:-
heavy periods
pelvic mass
bowel symptoms
bladder symptoms
cyclical pain, swelling

In general any symptoms that are cyclical in nature and that get worse during menses may be due to endo.

It is also the second most common gynae problem seen in women after fibroids. I would like to point that out as a GP told me that endo is not common. He was completely wrong there. Many GPs to my mind are pretty much not up to speed when it comes to gynae issues and thus mess around in ignorance. A patient should always be referred if presented with the above problems.

As my periods were and remain irregular in nature (this irregularity has a different cause and was diagnosed initially by the gynae) I did not suffer this every month thankfully but my periods remained very bad for many years.

I eventually had diathermy surgery for another reason (PCOS) and at the same time the surgeon lasered away the endometriosis. It was extensive throughout my uterus and entire uterine cavity (saw the photos about a week post op!). No wonder I had been in such pain for all those years; I told the gynae as much at the time. I do get the occasional flare up a decade or so on from the op and it has recurred but I am far better these days than I was in my 20s.

[www.endo.org.uk is a good website with lots of information on it.

Endo requires careful management; see the best gynae you possibly can. You need to find a person with an up to date knowledge and understanding of endometriosis; ask outright how much experience they have had in dealing with this disease.

Luckily I was diagnosed pretty quickly and early on (probably 18years ago pretty much after starting my periods) but only as my Mum had suffered with endo for years and pushed for a diagnosis.

Like others have mentioned my main symptoms were very heavy, irregular periods (sometimes I could bleed 20 out of 28 days. Horrendous period pain, bowel problems, pain down both legs and my back and sex being almost impossible due to pain.

I seem to be in the minority in that I had no conception problems (apart from the painful sex!) despite being told it was likely to be an issue, although I have had early miscarriages twice, and remain unsure if they were linked to the endo.

I have had numerous treatments from 2 laparoscopies and surgical lasering of the endometrial tissue, 2 lots of hormone treatments (they basically put me through the menopause temporarily for 6 months each time) and I am now back on the pill back to back.

Things seem to manage/get rid of the pain etc for a while and then the endo tissue grows back or grows somewhere else and treatment starts again. I am on my second consultant after my gynae consultant referred me 5 or 6 years ago to a specialist in endometriosis.

Keep a record of when in your cycle you get pain, bleeding, bloating etc and take it with you and most of all push and push for a diagnosis/endo specialist. The inconvenience and stress of laparoscopy done under day surgery is worth it for a diagnosis and treatment. Good Luck

Thank you so much ladies and I'm sorry to read that you have all had such a horrible time but encouraged that you finally did get a diagnosis.

I have been keeping a pain diary and following your advice will definitely continue with that and am determined that I won't be fobbed off at my appointment.

Thank you so much again for your comments, it's really helpful to hear your experiences. I feel a lot more confident that I am probably not barking up the wrong tree thinking that I may have this problem and feel more optimistic that I may finally get some answers.

I had pretty much all the symptoms from early 20s to when I started ttc At 26. I finally got referred after 2 years of trying, had a lap. When they discovered the endo. The doc cleared most of it in the lap operation and I went on to get pg 9 months later. I got pregnant with my second on the first try when ds was 11 months.

Btw, the endo symptoms did ease off in the year after I had ds and for about a year after dd but they did come back