Epiphany moment

[_caitlin_]

I am so pleased to have found this website and a possible explanation for the chronic pain I have experienced over so many years.

I've been back and forth to the docs for years and eventually settled for a diagnosis of IBS, which really didn't seem to cut it, dietary changes did nothing and no medication touches it.

I kept a detailed log recently and realised that I'm experiencing intense pain for a week around the time I ovulate each month, together with very severe period pain - I'd not made these links before.

I'm now going to head back to the doctor and see whether endo might explain what we've not really been able to for all these years.

[Sunflower846]

Hi it took me 10yrs to get diagnosed. I had been seeing my doc since i was about 18, always had awful periods but they got worse the older i got. I was referred to a PMS clinic, i know i laugh too and had internal scan ect, told i had a small cyst but nothing to worry about. I had my appendix removed in the dominican,LOL. wasnt fun but had an extra week on hol for free But was told then i had a cyst on my right ovary but again when home told its nothing to worry about. I was 26 then. I then begged my doc at age 30 to get referred as i was now in pain for 2 whole weeks every month and she agreed. I had my lap done in nov there and they found severe endo. both ovaries stuck to my bowel, endo between my womb and bowel and endo all over my cervix, generally a complete mess. I had most endo removed but have deep rooted bits left all over and my right ovary is covered, i have bn told i need to do hormone treatment which sucks. Please pester ur doc if they dont refer u then see a diff doc. Dont put up with the pain. I wish i had pushed them more and i wouldnt be in the mess im in now, Sorry for the story but just showing u what can happen when docs think they know best. Hope u get checked out xxx

[lavinia1 in reply to Sunflower846]

Hy lynnieb846

The same think happened to me as well. It took 10 years for a doctor to discover that i have endo. But during all those years all the doctors were telling me that i am fine and the pain is only in my mind, and to tell you the truth after a few years i started believing the same thing. Anyway I got referred to this doctor in London and he told me the first time that i have endo. and since then i did 3 operations because my bowel was stuck as well to my uterus and they had to cut a part of it. I was fine a few months after the operations but the pain came back every time and now i have again two cysts. I had a mirena coil for a year which was ok but i was trying to get pregnant so i had to take it out, and because i was trying to get pregnant i never took any pills or anything. I am still not pregnant and I am getting quite desperate but still trying??they say that hope is the last to die. Anyway the pain is horrible a week or two before period its so painful that i cant move and have to sit down, it goes away after a few painkillers and half an hour or one hour though. The problem with my leg is permanent though, if i try to walk fast its just killing me so much that i start to limp and lately its more often. To top everything i dont think i can remember when i wasnt in pain during intercourse, its just so frustrating????????.

I am at a point when i dont know what to do anymore, if i have another operation i will have even small chances to get pregnant because of the scars if i dont the cysts will keep come back, so ladies what do you think???

I wish you a lot of health and dont let the hope die!

[Sunflower846 in reply to lavinia1]

Its bloody shocking this is still happening. I was told that endo was very common, so why is it still taking all these yrs to diagnose. Im so angry as they are ruining peoples lives. My friend wants me to sue as i have on my medical records me being bak n forth to the doctor, i was also referred to a PMS clinic and still nothing done.

I cant have sex now either as its caused me to have vaginismus and my muscles wont let anything in now! So depressed about that.

Do what u feel is right, if i was u i would keep trying for babies but maybe im saying that because i cant even do it yet, U should really go bak and get checked out incase ur cysts are back. Ive heard lots of woman say that ur chances of getting pregnant is soon after an operation :). Hope it all works out for u, would love to hear from u with great news soon. Massive hugs to u xxx

[Juleyanne]

7 to 10 years is shockingly the average time for diagnosis of endo according to Endo groups all over the country! By that time endo can spread and worsen and adhesions (scar tissue) can form sticking adjacent organs together where there is inflammation and lesions. My advice is if you suspect you have endo see an endo adhesions specialist gyne! They are few and far between but do your research and ask to be referred. Gp's will most likely firstly work by elimination ie

IBS diagnosis is all too common to start with, after that they will probably send you for an ultrascan which generally only picks up large clumps of endo and can miss smaller deposits. CT scans come further down the line as I believe they are an expensive option. Then after ultrasound it depends if anything is picked up on the ultrasound, if it does ie Fibroids, Endo clumps, Polyps, Cysts etc then a laparoscopy is usually performed (tiny camera on a thin wire to look inside pelvic cavity/stomach).

If they find endo or anything they can deal with then and there they can laser or cut away endo or adhesions, small fybroids, cysts, polyps etc. You do of course needs to be aware that the more surgeries you have the greater risk you have for adhesion (scar tissue) formation which in itself can be a painful condition. Adhesion barriers are used but although this reduces adhesion formation it generally cannot completely stop scar tissue in all cases. A Lap is generally fairly non invasive

but any surgery can cause adhesions especially if your prone to them. Removal of every tiny bit of endo if it is found, is the number one key to preventing ongoing problems. Often these days once endo is confirmed, especially in younger women, hormone therapy will be used such as Zoladex injections monthly with hrt addback Tibolone to send a women into pseudo temporary menopause (ie stop periods) which drastically reduces oestrogen which is the food of endo!

Previously, women not only would wait years for diagnosis but face repeated surgeries due to pain returning due to adhesions and as 'not all endo' was successfully removed or found! Many endo adhesion gyne's downline, when a woman has completed her fertile years will suggest radical hysterectomy if endo and adhesions history and attempted treatment and surgeries have failed which involves cutting out all deposits 'often hidden in pouch of douglas', in severe cases a bowel ressection may also be necessary. Hysterectomy is not a guarantee of pain relief depending on what organs are affected as more adhesions can result from major surgery but can work for some.

The sooner endo/adhesions are found the better as early treatment is key to preventing ongoing problems downline.

[tortoiseshell]

Hi Caitlin,

Just was gonna say, keeping pushing for a diagnosis! :-)Something has to change with the diagnosis times they are ridiculus.

I was told i had/have Ibs for years, and though i think i have that, i knew it wasn't only that.

I now have a diagnosis of Adenomyosis , the muscle wall of the Uterus becomes infiltrated with endo like deposits. This leads to significant of pain, usually heavy bleeding for most women, and adjoining things like ibs, Interstitial cystitis, fatigue, nausea. etc.

(After the IBS diagnosis I had many other suggestions- my first laparoscopy was considered normal, then 2 years later i was having a lap to remove cysts and they then found the adenomyosis, this hadn't been mentioned to me at all until that point.

The relief (after shock/confusion) i felt from just being able to put a name to it was huge! You will get there i promise

in the mean time keep pushing for tests, esp. ultrasound. MRI - I think they are developing more techniques for identifying pelvic pain, there are some clinical trials in the uk at the moment.

Also if it does turn out to be adenomyosis rather than other things, there are new surgical techniques they can do to preserve fertility. I think about 10 % of women have both conditions (endo & adeno)

Try things to keep stress at bay, like yoga, meditation or tai chi. cut back on alcahol or try to identify triggers as cutting back on these things can help (i gave up smoking 2 years ago for example)

Best wishes for health & take care, x

[AcRaven]

Hia,

I completely hear you. I had my own epiphany moment 10 months ago after 22 years of chronic lower back pain that has become increasingly worse and falls around my cycle in the same way yours does. It has taken me this long to get on the list for a laparoscopy (the best tool for diagnosis, but as I am now 40 and have had the pain for years I suspect I am not going to like what they find It took me so long as I have relied on anti-inflammatory tabs and acupuncture for most of this time and the doc has never taken me seriously re. 'period' problems a I got pregnant easily (those 18 pain free months should have made me push harder but only when I started reading up after my sister was diagnosed with endo due to infertility did I realise the significance of this) - ultimately it was when I started having serious side-effects from the painkillers that I realised how much pain I was in without them and started to ask for something to be done.

The hoops to jump through prolonging the wait have been MRI/X-ray/Ultrasound and 6 months of Depo (Don't recommend - pain is less but I feel it every day instead of the normal 10 day respite every month and I have been bleeding for 10 weeks). I also had to do physio and see a CBT practitioner (as apparently I was depressed - nothing to do with constantly being in pain and unable to lead a normal life!) as various doctors thought I was just lazy and stressed. I had to see 3 different GPs to finally find one that got me referred to the Gyne specialist and now it will be a wait for the laparoscopy. You have to keep pushing and make it clear how the pain is affecting your life - but if you can afford to pay for a specialist just do that as it takes sooo long on the NHS.

Hope you get sorted and have a healthy outcome. xx