I need help and advice pronto!! ENDOMETRIOSIS???? WTF???

I think the GP should refer you to a gynae consultant anyway at a subfertility unit. I also think you need to talk to this person at some length about your menstrual and gynae histories. Would also suggest that you do not attend these appointments on your own - moral support is vitally important besides which the other person can ask questions.

Write down anything you want to ask well ahead of time - no question is daft.

Look at www.endo.org.uk and also consider phoning their helpline too.

Anniemac - thank you for your sympathy. It's been awful losing Jai but we're surviving.

mummy2olivia

This was also not caused by something you did or did not do. The causes of endometriosis are unknown; I feel there are several factors involved.

I'd call the Endo UK helpline on 0808 808 2227. They are knowledgeable and can give support. Do read their website too; it has helped me a lot.

Is GP going to refer you to a gynae; you should be seen as a matter of course.

Attila x

Hi Mummy2olivia

Have only just returned from my two weeks holiday so am hoping you see my reply to you before you yourself go on holiday.

Have read your initial posting.

Re your comment:-
"But I have a few questions (I hope Attilla sees this!!!)

• "is this a standard treatment???"

The pill is one option as this dampens down the endo whilst taking it. However, once you stop taking it it can recur.

• "Is endo normally diagnosed with a laproscopy? Could I do this privately whilst taking the pill?"

Yes to your first qyestion. Think it is certainly possible to have a lap operation whilst taking the pill but you would need to discuss this with your consultant.

Endo is normally diagnosed during a lap. From reading what happened to you in your initial post I think it also sounds like endometriosis. The pelvic pain experienced along with your mid cycle pain and pain in the rectal area (have had that as well) are two sym,ptoms associated with endometriosis

"- Are the symptoms I describe really classic symptoms?"

I would say yes they are. The four main symptoms of endo are pelvic pain, subfertility, mid cycle pain and painful periods. You can also have painful sex (this is also an indicator of endo). Basically any symptoms that are cyclical and that get worse duyring menstruation may be due to endo.

-"My GP said that endometriosis can be so mild that you dont feel symptoms til something triggers a flare up such as a pregnancy- is this right?".

This can happen but not always. My periods were extremely painful due to endo from the time I started menstruating at 14. I had many of the classic symptoms associated with it - extremely painful periods, pains in rectal area and stomach, pains down legs.

In my view you should be referred to a gynae for further evaluation.

Would suggest you look at www.endo.org.uk
which is the webiste of Endometriosis UK which campaigns for greater awareness. It also has a great message board and a helpline number you can call.

HTH and good luck

Attila x

Hi, Yes you can still get the pain whilst on the pill and it may take a little time for it to build up enough in your system to have an effect. Your DH could b right and you may have a better response next month. However it could also indicate that the treatment isn't the right one for you.

I have endo. I was diagnosed by laparoscopy 4 years ago. My endo is widespread and therefore they can't laser it away. The bits that effect me most ae growing into my bladder. I get several types of pain. Theres the bladder pain which at its worst means i have to muffle my screams when i pass urine and dig my fingernails into my thights to distract from the pain a little. It also hurts before and after i go. I have the intense period pains in my stomach and back. I have what feels like intense cramp somewhere inside that having talked to people who have been through it seems to be similar to contractions. I have the sensation that there is not enough room in my pelvis, like a strong pressure wich is more uncomfortable that painful, as is the sensation that my organs are sticking or rubbing together. I also get some 'spasms' during sex that are pretty painful. What i am trying to say is that endo can show itself in many ways including as others have said not at all!

The good news is, mine was mostly controlled whilst on the pill. I have also had two lots of treatment which has involved 6 x monthly injections which put me through a temporary menopause. The latest one i finished recently and was in preperation for TTC. I had my first period since then and things are 100 times better. Not totally fixed by any means but i am much less anxious about having to have a monthly period for a while something that i couldn't have coped with before. There are lots of different treatments out there, including some alternative therapies and a special diet. Good luck and i hope the pill does work for you

Hi, dont know if you got all the answers tht you want yet but thought i would give you my story to see if any of it helps.
Always had painful periods and irregular ones too was put down to stress and many other things then finally was agreed I had poly-cystic ovaries. Was happy with that diagnosis apart from the fact I had no other symptoms but then got worse, went a year without a period and sex was so painful it made my cry! Was finally referred to a Dr at the hospital who did a lacrospacy (sp) but before said he didnt excpect to find anything cos i was young etc. I was down there for 4 hours and when I came round was told that I had alot of and it was around thand on top of my womb (causing the painful sex) and around my ovaries and I would probably need help ttc. I was then due to go back and have my operation to have the endo burnt off but a few days before had really sore boobs and my mum made me do a pg test (just in case) and guess what...I was pg after being with my partner for 3 weeks needless to say I didnt have the op but had a beautiful son instead and it ha kind of helped tone it down. Now ttc DC2 but not happening as quick as the 1st one

Sorry for the long post but hope that helps.. Good luck

I haven't read through all the posts properly but after TTC for a year or so I had a laparoscopy etc and they said I had mild endometriosis. After a few more months of TTC I had laser treatment on it by Prof Sutton in Guildford. (Think he is a world expert).Turned out it was actually quite severe and there were some big cysts as well. (I had aboslutely NO symptoms at all).Anyway- got pg the next month! And after trying again for only 2 months am now pg with DC2.
Def go and see a proper gynacologist. If you have private health insurance don't mention anything to do with fertility to the health company when you need to get clearance for a referral- just say it's painful etc. (Sounds as though you are in loads of pain anyway) I got all my treatment done privately even though I wasn't covered for anything to do with fertility.

Hi Mummy2Olivia. I would completely agree with mum2jai that you should go and see a specialist rather than a general gynae or letting your GP treat you. Endo is a very complex disease and effects everyone differently. Some people have a lot of pain, and very little amounts of endo, and some people have no pain or symptoms (like myself) and have severe endo. There is no cure for endo unfortunately, and whilst the pill may help things keep at bay for a while it won't cure it. Let me know where in the country you are, as can recommend an excellent consultant in London if you'd like one. Good luck.

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Hi! I was diagnosed with endo when I was 22, many years ago, because I had an ovarian cyst. I also got the cyclical pain you describe. When the cyst got really big I had pain almost constantly for 6 months but it got worse around my period.

I lost my ovary because I waited so long to get treatment so I would ask for a referral to a consultant ASAP. They can diagnose a certain amount by scans but they really need to do a laparoscopy to make sure - and they can treat at the same time by laser so well worth doing.

My endo was pretty aggressive and after major surgery and drug treatment it came back hellishly. So I ended up having more surgery and was then on drugs for ages. After that I went on the pill - it definitely does help to control things but I think you need to get what's there treated first - and then it can control its return.

GPs, and even some consultants, are not very skilled at dealing with endo. So I think you need to see someone who knows what they are doing. It can make all the difference when it come to preserving your fertility.

We were always told that we would have great difficulty conceiving. We tried for ages, and 2 weeks before IVF, found we were pregnant with DS1 6.5 years ago. When I was bf him, I unexpectedly got pregnant with DD. And then 2.5 years after she was born I had DS2.

In Feb, I found myself unexpectedly pregnant with DS3 (still think of myself as infertile so not good at contraception) but 2 months ago at nearly 21 weeks he died. It's been devastating but it's not endo-related, we're told. And we do still count ourselves extremely lucky given the chances of me getting pregnant with my history. We'd love to try again, but I'm 39 now and, as I say, I still think of myself as infertile so I'm not holding out much hope.

Endo definitely improves with pregnancy but can also cause infertility and early miscarriages. I would definitely go see an endo expert. Hope that's of some help.

You might find some good info here;

www.shetrust.org.uk/

I was diagnosed with it 7 years ago, I was having a laparoscopy for something else but the consultant said to me afterwards that he's found it while rummaging about. At that time I had no symptoms.

7 years on my periods are heavier and more painful, I pass clots and sometimes flood. Some months are worse than others. I don't get really, terrible pain though.

Hi m2o

I have been ttc#2 for 2.7 years and had laparoscopy and lasering for endometriosis a couple of days ago. I had no pain at all from the endometriosis and it was only suspected because we tried IUI and the cycle was cancelled due to overstimulation and a cyst which looked like an endometrioma.

The odd thing about endo is that you can have really bad deposits with no pain or not much disease with loads. Your GP may well be right that 3 months on the pill will calm things down. I am now doing the same for 2 months, even having had the endo removed.

It can definitely affect fertility (although as had been said, it doesn't always) and I too had a mc and then a cp. The endo can create a 'toxic' environment for an early embryo as well as having a mechanical effect on conception.

So I would trust the GP and maybe ask for a laparoscopy if you have no luck after a few more months.

Good luck!

It may have nothing to do with it as just jumped onto the tread and didn't read but am assuming you are worried about concieving.

One iof my very close friends was diagnosed with Endometreosis at 13 and was told she would probably never have children but they would allow her totry with fertility treatment when she was old enough so when she was 21 she decided to try it and they gave her the date for march 2006.

She fell pregnant naturally in January 06 and has just had her second child in Fevbruary of this year so.... LOL just thought Id tell you that.

It certainly seemed to work for me.

I was diagnosed by a laparoscopy when I was 18 - after being told for ages that it was just normal period pain that all teenagers got ( - really? fainting and vomiting is normal?!) The laparoscopy was a really easy procedure - I would have been in and out in a couple of hours except I reacted badly to the anaesthetic and my blood pressure practically disappeared! But even with that I was out the same day.

I was put on the pill for three month stretches for a year (but I wasn't TTC - don't know if they'd have bothered with it being that long if I was older and wanting kids) and after that I never had a problem with pain (I still get cramps, but nothing pain killers can't cope with). And it only took a couple of months when we started TTC.

Hope that's some help - good luck with getting it sorted out!