Could I have Endo?

Hi,

I am new to this and i have similar symptoms to endo. I have been having bleeding before my menstrual cycle, first it started of as a little bit, but I had it for a week before my cycle as a brownish colour then turned the normal colour when i actually got my period. I have been on the pill for about 10years too. I also have been experiencing severe pain when trying to pass wind (doubled over pain) and this month has been a really heavy flow with severe ambdominal pain tht feels like period pain, but have had this for 2 weeks. This also seems to be getting worse with every period, so much so that i couldn't go to work one day last week, and I layed in bed most of the day. The pain sort of feels like its in my lower abdomen and lower back. I have had this pain for the last year or so. I had a freezing of the cervix about a year ago, and this stopped bleeding whilst having sex, but sex is still painful if penetration is very deep, and recently had by appendix out as doctors thought this was the cause, but seems that was not it, as I am still suffering. I saw my dr last week who thinks it is consipation and gave me some laxatives, but still no relief (and bleeding from the rectum). A relative said my symptoms sound like Endo, but i am not sure. I know that these symptoms are pretty general, but hoping someone who has it, may be able to shed some light, and could tell me weather i need to see a dr, or a different dr.

The only way to get a proper diagnosis for Endo is a lapraoscopy. You could have a cyst which could be causing pain, and you can check for cyst's via ultrasound. I never had any pain at all (only painful periods and painful sex), then I fell off a chair and I had really bad abdominal pain. Went to ER and was told I had suspected appendicitis, but they never did any tests and i was discharged the next day.

I went back to my own GP and demanded an Ultrasound where it was discovered i had a mass the size of a tennis ball in my abdomen, so then came the lapraoscopy to have the mass removed (ended up being what they call a chocolate cyst) and they discovered i had severe endo.

Love

I would definately be seeking further investigation by your GP or Gyno. The symptoms you describe I can say that I had alot of these symptoms over a 20 year period and went to medical centre doctors and got a multitude of explanations and none of them suggested endo...... Finally two months ago I finally had exploritory surgery and was diagnosed with very servere endo. I am scheduled for major surgery in Aug this year as it involves bowel and reproductive organs too. My local Gyno could not perform the surgery due to the severity of the endo.

My suggestion would be if you get the brush off from your local doctor and this has been going on some time I would definately seek out a second and maybe third opinion. Ultra sound can sometimes detect endo but in my case it was missed even though really severe until I had an internal one. It did not diagnose me with endo but it identified that there was some abdomality that required further investigation. Also an internal exam may indicate if you have severe endo as you might be classed as having a rigid uterus which my suggest that you need further investigation also.

I can only talk from experience but I would suggest to you get it checked out. I am no doctor but the symptoms you have described do all sound like endo symptoms to me.... if you don't feel that the first opinon is correct then maybe seek out the help of a specialist that deals with endo as a speciality.

HTH

Good Luck.

thank you for the response. I have had an internal, which showed everything as being fine, so I will be definatly getting another opinion.

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thank you for the response. I have had an internal, which showed everything as being fine, so I will be definatly getting another opinion.

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I had in the past internals that did not pick up endo. Internal only did at the very end stage of the disease.

HTHs

I was diagnosed at 40. The only symptoms I had before that age were very painful periods in my younger years, same as my daughter. It wasn't until I had abdominal pain that couldn't be explained. After many tests I went to a new Gyno that diagnosed me. I then found a clinic in Sydney where they specialise in endo and never looked back. I took my daughter to see them and they said that she certainly had the symptoms, she had her laparoscopy on Monday and was officially diagnosed.
Please find a specialist in your area, no question about it. It's your body and you know your own body better than anyone. If you aren't happy please get a second opinion, quality of life is important.
Wishing you all the best,
Linda

I agree with all the above & pretty much say the same as everyone, get another opinion & where possible, try to get a laparoscopy done. It's day surgery and reasonably un-invasive although I do remember being in quite a bit of pain for a day or two afterwards.

I initially experienced Endo pain at 15yrs of age. The first time it was so bad the sports centre I was at, called an ambo. It didn't get officially diagnosed until I was 19 after seeing a Gyno that had a special interest in that area. Although I suffered an immense about of pain as most women do, I was one of the lucky ones to have only a very small amount and minimal scaring internally. As I know it, Endo can be somewhat silent in respect to pain yet you can have massive amounts of tissue internally and/or have lots of pain but with minimal tissue, so symptoms can vary greatly, so even though your symptoms might be slightly different from the next woman's, you could definitely still have it. I've only had the one surgery to remove the endo tissue and have not had to go back and was luckily successful in conceiving naturally even though I was told I would have difficulty.

All the best with seeking the answers you're after.

thank you to all who responded. I had a bout of serious pain at work last week that had me in tears, and i went home (after debating weather to sit at the hospital for 3 hours), and the pain eased. Is this typical? The pain wasn't in my abdominal area tho, it was more in my bottom.

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thank you to all who responded. I had a bout of serious pain at work last week that had me in tears, and i went home (after debating weather to sit at the hospital for 3 hours), and the pain eased. Is this typical? The pain wasn't in my abdominal area tho, it was more in my bottom.

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With endo.... all I can say is..... for me there is NO "Typical"..... and thats what makes it so hard to diagnose as everyones symptoms differ..... some people with very little scaring and leasions have immense pain and then some with extensive scaring and leasions have little pain.....

Depending on if and where you have endo would depend also on the symptoms..... Some people do experience bowel pain with endo......

My best advice is to seek further medical advice and follow up.... Any extreme pain should be investigated as it is not normal......

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Hi,
as I am still suffering. I saw my dr last week who thinks it is consipation and gave me some laxatives, but still no relief (and bleeding from the rectum).

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I'd advise you to see a doctor, bleeding from the rectum isn't the norm. You should be given a cause for the pain. It's hard to confirm endo, but just be prepraed for a few tests. Information is power, you should be able to ask any questions and get answers.
Let us know how you get on.
Linda

Hey,
I dont know if this will help or not, but it sounds like something i had when i was about 10-14, and it turned out to be a kidney infection turned UTI/Bladder infection.
My doctor never diagnosed me, but told me it was appendix, then constipation, then AF pain, then possibly endometriosis, then i went to a different doctor, and she gave me antibiotics for a kidney infection, and it went away like that. I went to a specialist and she told me i could have abdominal migranes too, and to go to her when i got the pains again, so this was after my kidney infection diagnosis. Never had it again.

Im sorry if im wrong, but it really sounds like what i had.

Hi girls,
I'm scared :doh: I DTD twice on the weekend with DF and both times it hurt :( I haven't experienced this before... never has sex been painful.

It was a pain that was felt in my abdomen, right hand side mainly that felt sore as he thrusted (sorry TMI) but its hard to explain otherwise...!! we changed angles and that helped but it was still kinda sore...felt like he was poking my kidney or something!!!! this morning i have had small minor menstrual cramps as i am due for AF today... i've been reading a bit about Endo on the net and i know you cant diagnose it unless you have a lap... i am considering talking to a gp who can refer me to a gyno - what do you girls think i should do?
We want to TTC#1 very soon in the next few months so its important if something is wrong that i look at it now rather than later.... could it be ovarian cysts? Or Endo? or PCOS? I dont want to self-diagnose myself either....!!!
TannedAngel - could it be my appendix???

I am also hesitant to see a regular GP as they are so useless and dont bother looking into things, they are so relaxed about it all and tell you to go home and try a different sexual position or something! BTW, we were having sex in a regular position!!!! Nothing out of the usual...

I'm a bit worried :(

Hi Ren,

Hey hun, no doubt you are a bit scared. It might be just a cyst or it might even be just an area of your bowels are a bit tense. not necessarily endo. I would definately go to get it checked out. Any pain is not good and you need to be sure. Sounds like what i feel when i have a cyst though. However that can be made worse if my bowels are full. Get it checked out hun and put your mind at rest. They will just do a scan to check. The thing is cysts can appear very quickly and disappear just as fast. Good luck and keep us intouch.
Hippy mum

thanks HippyMum... Can they appear on an early preg abdominal U/S? I didnt know that... so they can see them? (if they havent disappeared that is).... ok... i'll see if it happens again in the next few days when we DTD and if it does, then i will def make appointment to see GP and get a scan done...
I'm relieved to hear that it doesnt necessarily mean I have endo... i guess i am thinking worst case....

So Ovarian cysts sound very common then?!? do they affect your fertility????? that is what i am worried about

Hey there Ren,

Cysts can be seen on scans yeah, the bigger the better of course but hey can be seen. Depends on the cause of the cysts. Endo can cause cysts, PCOS causes cysts but also most woman get cysts but don't know it. So they are not necessarily a prob for fertility unless one of the above is causing it. I am sure there are many other things to consider but this is all i have had to deal with myself.
My cysts would hurt because they got quite big and would haemorage which is painful and the pressure of sex or sitting or walking etc would agrevate it.

If it persists i would get it checked out. But you seriously don't have to worry, there might be lots of reasons and a lot of them are not life or death or infertility! Keep trying hun, you will get there.

Hippy Mum

thanks HippyMum.... we aren't TTC until Sept. I won't worry too much, only see doc if it keeps hurting while we are DTD!!! :hugs:

Hey everyone
I'm a medical student who was diagnosed with endo at lap this year. I'm not TTC (I'm only 22) but was looking at forums about endo to see how others have experienced this disease. I want to post here for sellarsn and others who are having trouble getting help from Doctors. I have experienced the way that Doctors brush off concerns, particularly about period pain (If I had heard 'Have you tried naprogesic?' one more time I think I would have punched someone!:wall:) I recently saw a study from the UK that showed that the average time between the onset of symptoms and diagnosis of endometriosis is 6 years!!! That is appaling and something that the medical field needs to rectify ASAP. I finally got a referal to a gynacologist after seeing my GP about all my symptoms (pain, pain , pain) once again because I really wanted to have pain-free sex with my new boyfriend. I got the referal because I demanded one. I think that this is the key.
DO NOT be afraid of doctors
DO NOT be intimidated by doctors
DO NOT think that doctors have all the answers and let them convince you everything is fine when you really think there is something wrong.
Doctors are just normal people (some don't seem to beleive this themselves but that is their problem) and they can have bad days and lapses in concentration
A good tip is to ask the doctor to repeat back to you what you have told them. This is helpful for both you and them and ensures that they have heard and considered all of your symptoms.

Be firm.If you specificaly say 'I want you to give me a referal' firmly (remember you don't have to be their friend, be a ***** if you have to) then most doctors will find this hard to refuse.
I've also discovered (as a med student) that many doctors, particularly older GP's know very little about endo and beleive a lot of out-dated myths surrounding the disease so do some investigation yourself if you a re worried about something you have been told (that said...remember that the internet is not v. reliable)
Specifically to sellarsn... I think that you need to see another doctor who is going to listen. What you have described could be a number of problems including endo. Insist that the symptoms be properly investigated (particularly the rectal bleeding) and keep persisting until someone can help sort out what's going on as you shouldn't be living with that amount of pain.
Sorry this is so long I hope that this is helpful advise for anyone who is concerned about painful symptoms.
good Luck everyone :)

Hey girls,
I haven't had any more pain whilst DTD since that one time so it must have been my bowels or kidneys or something.... i'm fine thankfully.... thank you all for your help and advice when i was a bit frightened :hugs: i guess i just panicked cos' we are TTC#1 soon and I don't want to find anything wrong....

and Thank you Elsion.... I agree re: docs being too brief, not caring at times etc... it's so hard to find a good doctor, i am still looking....and I've learnt to speak up at the doc and ask for things otherwise they always just send you home with a couple of panadol in your pocket that doesnt resolve anything....