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

[poutintrout]

Hi, I have posted this in Conception but it has been suggested that there might be more traffic over here.

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 health aspects too which seem to be getting worse) 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, sorry to hear you are suffering and to hear about your TTC. Will try and answer briefly otherwise you will have an essay!

Symptoms: increasingly heavier periods after birth of DCs (more about that later), period-type pains all month, all aspects of my cycle seemed to be emphasised, cramping, bowel issues, bloating. Agonising abdo pains before period and then stabbing pains/flooding/feeling wiped out. Having to plan my entire life around when my period may come because I would be keeping to the house as much as possible.

Treatment: after seeing 3 Drs over the period of about 2 yrs for all of the above was finally referred for a scan (I had a cyst) I collapsed a couple of weeks later in excruciating pain and was admitted via A&E. That kicked the hospital into an internal referral to the gynae as they straight away said it was endo. From this until I had laparoscopic surgery to excise the endo and cyst was 5 months. I am now in the middle of 6 month course of zoladex. Feel so much better!

TTC - I was 'unexplained infertility' several yrs ago. Had successful IVF. My endo consultant thinks it is likely that is what was wrong and was amazed no-one had investigated at the time (tho I had no endo symptoms, all came on after DCs). The consultant was the one who brought up the subject of conception so my experience has been different to what you have read. Yes ask at your appointment.

Hope this is of use, ask if you want more info. Good luck.

hi there,

I was fobbed off for years with heavy long lasting painful periods by my GP.
It really affected my general health as I was feeling pretty exhausted most of the time with hormone related depression and anaemia.No one was prepared to do anything until we started to ttc and couldn't.

I finally got referred and saw a brilliant gyne/fertility consultant who said just from listening to my symptoms he was sure I would have endometriosis. Finally someone listened. I had a laparoscopy to confirm this as ultimately this is the only way to be sure its there and got it treated. I then conceived 4 months later!!

My sister also got the same investigations as she had been struggling to conceive too and she was found to have endo too. She had two lots of treatments and 2 rounds of ivf but finally got twins 2 years ago.

It is a nightmare trying to get your voice heard. I was soo grateful to my consultant he is a true professional and has been very supportive over the years.

I did a lot of research on fertilty and would recommend charting temperatures This helped me identify a short luteal phase defect for which my consultant gave me Clomid which enabled me to have my second child.

Hope this helps.

My 16 yr old daughter has been diagnosed by our GP as having Endo.
A laparoscopy has been mentioned but because of her age our GP, at the moment, is trying her on the contraceptive pill to see if it improves her symptoms and periods.

I was diagnosed 2 years ago, but in hindsight, have probably had it for over 20. My symptoms were mainly painful ovulation and a very uncomfortable sex life which destroyed more than one relationship and at times puts a strain on my marriage.

As others have said, it can only be diagnosed with a laparoscopy but that can bring it's own problems. The one I had 2 years ago left my ovary stuck to my bowel and urethra, and despite a corrective one that I had to wait and beg a year for, freeing them up still didn't resolve my inability to sleep on my left side that came with the first one.

The current preferred treatment (until they find a cure) is to prevent ovulation using hormonal contraceptives. As my symptoms worsened dramatically once I got sterilised (and therefore came off the Pill), it seems to make a degree of sense. Am currently on the Depo Provera injection awaiting my menopause so that I can stop taking hormones, ironic as that's why I got sterilised!

But... I had no problems ttc either of my DCs

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.

pandsbear and gigidipster It is very encouraging that you finally got there and had your DCs. That is such a worry for me that I might never have a baby. I think that's a big part of wanting a diagnosis obviously in the hope that I might eventually get that elusive BFP but also just to get some answers as to why we are finding it so difficult to conceive. An unexplained infertility diagnosis is so frustrating!

It also resonates with me how your symptoms did seem to get progressively worse. I have noticed an acceleration in the last 12 months and an even more rapid change in the last 4 months.

marriednotdead I also think that I have had this for years too but never pieced it all together. I never imagined that so many disparate symptoms could be related and it's only since TTC that I have noticed the pattern in symptoms in relation to my cycle. I have always until now just thought that I must be a bit flakey what with the constant tiredness and various aches and pains! It didn't help that my sister has always had such dire periods too and I just assumed that it was normal.

Thank you so much again for your comments, it's really helpful to hear your experiences.

I was diagnosed with endo at 20. I had very painful, heavy periods which would cause me to vomit and faint. Eventually I was in pain or discomfort for the whole month so I got a gynae referral (the same week but I was very lucky). I had a laparoscopy where the diagnosis was confirmed and I began treatment with Zoladex the day I had the op. I found it very painful to have the implant as it was 'hooked' under the skin of my abdomen (without a local anaesthetic until I happened to change surgeries and the new nurse was appalled that I hadn't been given one before). I then had a course of HRT IIRC. My periods are still bad but the pain is no longer constant.
It hasn't seemed to affect my fertility as DD was conceived easily, but we're going to TTC number 2 this year and in the back of my mind I am worrying that it will be difficult because of the endo.

Sorry to hear you're going through this. My gp believes I have endo, though it is yet to be confirmed by lap and I am awaiting my referral. I have always had incredibly painful periods with pain that made me feel sick and faint, diarrhoea and pain spreading down my legs. I fell pregnant with dd by accident so my fertility seems to be ok, but since having her by elcs I have had pain in my left hip and back that radiates into my leg and groin that starts up to 10 days before my period and also happens mildly throughout the month. I have also always had pain during sex, especially in certain positions, suffer with constipation and vaginal and rectal pain more recently. At first they thought it could be fibroids and referred me for ultrasound, but they didn't see anything (endo doesn't always show - unless there are largish cysts on the ovaries), except for some free fluid that may be indicative of endo. Ironically, my actual menstrual pain is mildly better since dd, but this mid cycle stuff is annoying as I have no relief! Got gynae referral and still trying to decide if lap is worth it as I'm worried they may find nothing and I'll go through all that for nothing! But def want more dcs so want to know what I'm up against. Hope it all works out for you. Regarding mentioning your concerns about fertility, do mention it. I am a ned student and from what i've seen your fertility issues will be a big factor in how they investigate and treat you i.e. They will aim to maximise and maintain your fertility as much as possible. And most gynaes will see fertililty probs as a major sign of endo pointing to it's diagnosis.

Sorry about thread hijack, but does anyone have a diagnosis and have similar symptoms to me? Just want to make sure I make the right decision regarding the laparoscopy!

realhousewife

Yeah, I have a diagnosis and I have endometriosis.

I would certainly have a lap performed given the severity of your symptoms. Deep pain during sex is very suggestive of endo. To me reading your message, if they did not find endometriosis I would eat my hat.

I winced inwardly on reading about the pelvic and rectal pains as that was me as well.

A caveat though is that you really need to find a consultant gynae with a specialist interest in endometriosis; such cases do require careful management. Ask the gynae lots of questions, find someone really knowledgeable to take on your case.

www.endo.org.uk is a helpful website.

Thanks atilla. I'm in a dilemma as I'm a medical student and I know the gynaes are excellent at my teaching hospital, but I've chosen to go to another one as I just don't think it's appropriate to be treated by people I know! I've also observed a lap and it wasn't particularly pleasant so it's put me off a bit! Hope it all goes well for you too OP

I'm so pleased to have found this thread - I'm off to see the gynae on Tuesday and after wrecking an office chair with a flood last week I just want to get this sorted. Reading through I'm sure I have endometriosis even though I have conceived 3 children easily but after the 3rd it has really gone worse.

One question I have is did you or do you find it hard to lose weight with it? I really struggle to and wonder if this is part of the problem.

Also any advice and what to ask/say at my appointment?

I have had scans and they show a couple of small fibroids but nothing else. Have followed the link and I tick all the symptoms and those mentioned by other people on this thread.

Hi style. From my limited knowledge struggling to lose weight can happen in polycystic ovary syndrome. Not heard of it linked to endometriosis, though you can get endometriomas/chocolate cysts on your ovaries in some cases and I wonder if this could upset hormones? Interestingly whilst my periods have always been excruciatingly painful, they are heavy but not that heavy. I know lots of endo sufferers do get heavy periods though - but also heavy periods are common with fibroids. Not sure whether the size of them makes a difference?

I was diagnosed with both PCOS and endometriosis but the two are not linked; they are completely separate. Both have brought with them their own set of problems. In my case the PCOS made it much harder for me to conceive (I needed fertility treatment) and the endo deposits were lasered off. Both PCOS and endo can and do recur.

Realhousewife - painful and/or heavy periods can also be linked to endometriosis as well as fibroids. Although fibroids can often be seen on an internal ultrasound scan, endo cannot. It is usually only diagnosed through a keyhole surgery op called a laparoscopy.

Have been speaking to my mum and she said I have all the symptoms she had at 35 and had a hysto t 36 (my age now) I wond per if it's passes through the genes?

Yes endo often runs in families.

Thanks for the information - should I mention this tomorrow at my appointment or will it seems as though I'm self diagnosing and sympton spotting from past experience?

If they're taking a good history they should ask. If they don't however, you should mention it. Drs quite like it when the symptoms quit neatly point towards a diagnosis! I'm a medical student and it is helpful when patients tell us all the relevant symptoms.

Oh super I have it all written down just so I don't forget anything rather than quoting diagnosis!

Well that was a bit of a waste of time the options i have been given are :

Do nothing
Tri/Acid - already tried does nothing
Mirena Coil - Me and anything hormone based is a no no
Zol/HRT - which is horrid as it basically removes all hormones and then they have to try and find a balance with HRT

New procedure call NuroSure

But none of these will help with pain or could maybe help with pain, I think as soon as I mentioned flooding she had already made her mind up on what to do so when I pushed back again hormone drugs she was a bit stumped.

Anyone tried any of these? Now wondering if I just need physo for back and the period stuff is another issue.

Style- were you offered a laparoscopy or did you want to avoid surgery? Do they think it is endometriosis?

I have a diagnosis from a lap- grade IV, in a lot of places. Waiting on a treatment plan -prob zoladex or similar and then removal. But my periods are not massively painful - used to be quite bad but always manageable with otc painkillers, or heavy or long. I am struggling to conceive and when they did a pelvic scan they could see indicators (ovaries pushed down and a ring of scar tissue? around one ovary) so then booked me in for a lap. However the initial scan was booked on the basis of pain (as i already have a child so not eligible otherwise), but now have diagnosis am eligible to treat anyway (and apparently leaving it is not an option as it can grow through tissues? anyone else heard this?). Has anyone had this and had ivf (successful or not) before treating? My consultant said the odds were poor before treatment but I am very aware my first child is getting older all the time.

Wasn't offered the lap option as she said as I had conceived 3 children this wasn't an issue - i must point out at this point she had no notes on me so she didn't know if I had had IVF or not or even had trouble conceiving...

I'm hopefully going to speak to my GP tomorrow to see what she thinks of the options - I do have private health and might look at using it to be referred to a consultant. I don't mind surgery I'm just anti hormone drugs as it not treating the issue only stopping it. I was offered zoladex and HRT but after seeing what that did to my dad for prostate cancer I would go no where near it, horrid horrid drug and i think anyone who is given it should be given all the facts and side affects.

I really did stand my ground - DH would have said stroppy but i was so cross tha the only real option to women is hormone drugs, but maybe that's just me being oversensitive.

Wifeofdoom - I don't have any experience but zoladex is used to basically remove all your hormones and gives you a kind of mini menopause but as soon as you stop it goes back to normal i think so not sure how it works with IVF?

Was diagnosed with early endo aged thirty
Prescribed Danazol for six months. Please be careful if anyone mentions this drug to you, it ruined my life.
Now when I mention it to. One of the many doctors I have to see, they all react with sharp intake of breath.
I wish you every success with your treatment, but keep researching don't just take the first opinion.

Sorry to revive thread and then hijack it, but I have now started to get spotting/pink discharge between periods. I have gynae apt on 4th April, but should I see gp about it beforehand? My smears are up to date and normal and I had tv scan that showed no lumps/bumps.