Can anyone talk to me about endometriosis?

[Mollykins]

Hello ladies.... I have a few questions. I just want to hear from anyone that has been diagnosed with endometriosis and how you found out you had it, anything that made you suspect, etc. I want to hear from you even if you haven't been diagnosed! I'm desperate for information.

Thanks in advance.

 

[lady blush]

Hello ladies.... I have a few questions. I just want to hear from anyone that has been diagnosed with endometriosis and how you found out you had it, anything that made you suspect, etc. I want to hear from you even if you haven't been diagnosed! I'm desperate for information.

Thanks in advance.

Hi hun, i havent been diagnosed with endometriosis yet but im definate that i have it as period pains are getting worser each month, periods have also become very irregula,heavy bleeding, sharp pains in uterus even when not expecting period, shooting pains in rectum(sorry tmi) pains going down my legs.

If you have symtoms like these you could have endometriosis as well, i have booked an appointment to see my gp this week and hoping that he refers me to a gynacolosist so that they can do a laparascopy as ive had several scan and through that they have not been able to tell if i have it or not so they will most probably perform a laparascopy to have a better diagnosis.

Hope that helped.

 

[KellyW1977]

Hello ladies.... I have a few questions. I just want to hear from anyone that has been diagnosed with endometriosis and how you found out you had it, anything that made you suspect, etc. I want to hear from you even if you haven't been diagnosed! I'm desperate for information.

Thanks in advance.

Hi Hun, I don't have it but believe me I thought I did! I had really bad cramping, flooding and huge palm of your hand sized clots ( TMI SORRY) however this is from my PCOS apparently, must say that after losing weight this has now eased off so who knows!. anyway sorry couldn't be much help but didn't wanna read and run




K xx

 

[BlueBoo]

Hi, just thought I'd reply as it's nice to be able to offer help! I was finally diagnosed with endometriosis a couple of months ago, after going privately following my mc in June.
I had been TTC for 2 years with no luck, been on Clomid for 6 months unsuccessfully and was due to have IVF. During the fertility investigations I had had the HSG (where they check your tubes), blood tests, and an ultrasound but had never been checked for endometriosis as I did not have particularly heavy periods.
However, now that I know that I had it, I have found out that some people have it with no symptoms at all, some people have really bad periods, it totally varies. I never had heavy periods but after I came off the pill there was a clear pattern of quite bad pains on the second day each month. Also, (TMI alert) on that same second day I always had constipation and a really really painful bowel movement. This was every month. But the bad pain was always just for that one day.
Looking back, I also had pains in my legs, at the top near my hips, but I never realised that was connected. My digestive system had never been exactly great, varying from diarrhoea to constipation, and painful. This is apparently all connected as well.
It was only diagnosed after my mc, when I went to a private consultant to find out what was going on with me. I had been bleeding heavily for 18 days and having pains so she did an internal examination and said she could feel 'nodules' on the outside of my uterus. She immediately suspected endometriosis and booked me in for a laparoscopy. It was done under general anaesthetic, and while she was 'in there' she found that one of my ovaries was stuck to the fallopian tube and the tube was quite twisted and mangled. There were lots of adhesions, which she burned off. She also did the best she could with my ovary and tube. I was out of hospital that evening and recovery was painless and quick.
I think that is more or less all I have to tell you! I find it incredible that it was not checked in 2 years, and the NHS was prepared to pay for IVF without having ruled it out, but I think that doctors only associate it with painful, heavy periods. But thank god it has been found now and sorted out.
Please ask me if there's anything else you want to know. x

 

[Mollykins]

Hi, just thought I'd reply as it's nice to be able to offer help! I was finally diagnosed with endometriosis a couple of months ago, after going privately following my mc in June.
I had been TTC for 2 years with no luck, been on Clomid for 6 months unsuccessfully and was due to have IVF. During the fertility investigations I had had the HSG (where they check your tubes), blood tests, and an ultrasound but had never been checked for endometriosis as I did not have particularly heavy periods.
However, now that I know that I had it, I have found out that some people have it with no symptoms at all, some people have really bad periods, it totally varies. I never had heavy periods but after I came off the pill there was a clear pattern of quite bad pains on the second day each month. Also, (TMI alert) on that same second day I always had constipation and a really really painful bowel movement. This was every month. But the bad pain was always just for that one day.
Looking back, I also had pains in my legs, at the top near my hips, but I never realised that was connected. My digestive system had never been exactly great, varying from diarrhoea to constipation, and painful. This is apparently all connected as well.
It was only diagnosed after my mc, when I went to a private consultant to find out what was going on with me. I had been bleeding heavily for 18 days and having pains so she did an internal examination and said she could feel 'nodules' on the outside of my uterus. She immediately suspected endometriosis and booked me in for a laparoscopy. It was done under general anaesthetic, and while she was 'in there' she found that one of my ovaries was stuck to the fallopian tube and the tube was quite twisted and mangled. There were lots of adhesions, which she burned off. She also did the best she could with my ovary and tube. I was out of hospital that evening and recovery was painless and quick.
I think that is more or less all I have to tell you! I find it incredible that it was not checked in 2 years, and the NHS was prepared to pay for IVF without having ruled it out, but I think that doctors only associate it with painful, heavy periods. But thank god it has been found now and sorted out.
Please ask me if there's anything else you want to know. x

Thank you so much Blue! I'm beginning to think it is endometriosis. My grandmother had it and it led to her getting a full hysterectomy (she had 4 children before this happened though!) and my mother had it and recently got a hysterectomy herself. I've read that if you have a relative that has endometriosis, you are 7 times more likely to get it yourself. 7 times!!!

I want to tell you a bit about myself/my history and see what you think. I have two children, both surprises. I've always had the textbook 28 day cycle... even after my children were born. About a year and a half ago I became pregnant (another surprise) with twins, one was in utero, the other ectopic. Long story short, the pregnancy ended. I resumed my regular 28 day cycle after the bleeding stopped. We've been trying since then (this is our 17 month). This cycle though, AF arrived 2 days early and at that point I remembered that the cycle before last was also "not on time". So I went back and checked my calender, for at least the last 6 months (that's as far back as I've gone to check) my periods have become wonky. I go from 28 days to 30 to 29 to 27... etc. Also, the last few months I've been experiencing hip pain a few days before, during, and a few days after AF. Other symptoms are, severe lower back pain, cramping, bloating, stomach pain, and increase in (tmi warning) clotting (an increase in size of clots too). Last cycle AF was around for 7 days!!! It normally lasts 5 days maximum. Also, for the last 2 or 3 cycles my swollen bb's have been absent... it's normal for my to get sore and swollen bb's in the middle of my cycle (around O). My body also seems to be going back an forth from diarrhea and constipation- but I tend to find something I ate to blame it on. I'm so worried and not sure what to do. If I call my ob/gyn's office, what should I say? They always ask what you want to be seen for... :/

Sorry for it being so long! But THANK YOU THANK YOU THANK YOU!

 

[Mollykins]

Hello ladies.... I have a few questions. I just want to hear from anyone that has been diagnosed with endometriosis and how you found out you had it, anything that made you suspect, etc. I want to hear from you even if you haven't been diagnosed! I'm desperate for information.

Thanks in advance.

Hi Hun, I don't have it but believe me I thought I did! I had really bad cramping, flooding and huge palm of your hand sized clots ( TMI SORRY) however this is from my PCOS apparently, must say that after losing weight this has now eased off so who knows!. anyway sorry couldn't be much help but didn't wanna read and run




K xx

Thank you for responding Kelly and congratulations of your weight loss! I hope that you get your soon!

 

[Mollykins]

Hello ladies.... I have a few questions. I just want to hear from anyone that has been diagnosed with endometriosis and how you found out you had it, anything that made you suspect, etc. I want to hear from you even if you haven't been diagnosed! I'm desperate for information.

Thanks in advance.

Hi hun, i havent been diagnosed with endometriosis yet but im definate that i have it as period pains are getting worser each month, periods have also become very irregula,heavy bleeding, sharp pains in uterus even when not expecting period, shooting pains in rectum(sorry tmi) pains going down my legs.

If you have symtoms like these you could have endometriosis as well, i have booked an appointment to see my gp this week and hoping that he refers me to a gynacolosist so that they can do a laparascopy as ive had several scan and through that they have not been able to tell if i have it or not so they will most probably perform a laparascopy to have a better diagnosis.

Hope that helped.

I hope everything turns out right for you and you get your Your pains and experiences in this sound like mine! FX for us both!

 

[inperfected]

What made me suspect it was the increasingly bad pain (pretty much textbook (look for symptoms online) to be honest), and then I got a GP appt, then they sent me to a gyno (I have private insurance) who idd a lap on me and found it.

I also have polycystic ovaries (main symptom of irregular periods - i.e anywhere from 14 days to 66 days in past year)....

I wouldn't be too concerned about some changes after the miscarriage. cycles ranigng from 27-30 days isn't a bad range (and many people do get slightly varying ones). It could even be that you are say 27.8 days or something like that so you got it one night, then the next one you got in the next morning (so it seems like a day longer), if that makes sense?

 

[Timid]

Hmmm increasingly wondering if this is what my problem might be. Have never really linked all the pains I occasionally get to one thing before..

Am having bloods done to investigate if I might have PCOS .. do you think there is a possibility that the blood tests could indicate endo too?

Tx

 

[Mollykins]

Hmmm increasingly wondering if this is what my problem might be. Have never really linked all the pains I occasionally get to one thing before..

Am having bloods done to investigate if I might have PCOS .. do you think there is a possibility that the blood tests could indicate endo too?

Tx

From what I've been able to understand from my researching is that it can be detected during a normal check at your gyno appointment, through ultrasound, and laparoscopy. Someone PLEASE correct me if I'm wrong! I don't want to give out false information. I say that if you are going in to get bloods for PCOS... maybe share that you would like to rule our endo.?

Good luck and FX!

 

[inperfected]

Unfortunatley, the only way to diagnose endo is to do a laproscopy with a biopsy, thought very rarely, you can see signs on an ultrasound. PCOS can been seen through bloods, ultrasound and laproscopy though.

 

[Mollykins]

Thanks for the info. Do you know if there is any connection between PCOS and endo? Also, is PCOS something that can affect you at any point in your life or is it something that you have from the time you begin your menses?

 

[BlueBoo]

You definitely have to have a laparoscopy to diagnose it; I had had the HSG, and about 6 ultrasounds which never found it. It is very weird but the doctor actually showed me photographs of my ovaries and tubes after the operation where I could see the adhesions she was talking about.
The hip pains and the digestive problems definitely sound familiar. I would tell the doctor that you think you have endometriosis and ask to have it looked into. I would play up those symptoms rather than the messed up cycles etc as they might try to put that down to your body getting back to normal after your mc (I think this is what would have happened to me if I hadn't gone private).

Very best of luck, let us know how you get on xx

 

[Timid]

Thanks for the tips ladies...

The thing that made me wonder the most, is that on the odd occasion, I do get these strange shooting pains, sometimes in front, sometimes in the back, so painful that I have to stop and focus to get the pain to pass.. and I get the most evil period pains too - paracetamol doesn't work, I have to take co-codamol to get any sort of relief. I once had to leave work as the pain killers weren't working! The pain thing for me is quite odd because otherwise, I have a pretty high pain threshold and can stand quite a lot.

Will have to book an appt to see the doc when I get my bloods taken.

I did speak with my mum, as I remembered she had 'something' done - turns out she had an endometrial resection after having long periods really close together... not the same thing as me at all!

Interesting.

Tx

 

[Mollykins]

You definitely have to have a laparoscopy to diagnose it; I had had the HSG, and about 6 ultrasounds which never found it. It is very weird but the doctor actually showed me photographs of my ovaries and tubes after the operation where I could see the adhesions she was talking about.
The hip pains and the digestive problems definitely sound familiar. I would tell the doctor that you think you have endometriosis and ask to have it looked into. I would play up those symptoms rather than the messed up cycles etc as they might try to put that down to your body getting back to normal after your mc (I think this is what would have happened to me if I hadn't gone private).

Very best of luck, let us know how you get on xx

I set the appointment today. I am to see my ob/gyn on 16 Nov. so next Tuesday. I will let her (my doctor) know that my mother had it and I will focus more on the digestive issues and the pain. I've started writing everything down on one sheet of paper (instead of all over my annual planner) and it looks so bad having it all down in one spot. Do you think they will do bloods as a precaution?

 

[Mollykins]

Timid- Over the counter pain meds are not phasing the pain anymore... it's really disappointing.

 

[BlueBoo]

I doubt they would do bloods as I don't think, if it is endo, that they would show anything up. I had had previous blood tests for things like progesterone levels and they never found it then. The link with your mum is another major sign as I was told it ran in families (even though no-one in my family has ever had it, but then everyone else in my family just pops babies out at the drop of a hat!)

Good luck for Tuesday - in one way it's not nice knowing you've got it, but in another it's such a relief to have a definite answer, and to then be able to have something done about it xx

 

[lolo81]

Hi Mollykins! I hope everything turns out okay for you, but, like you, I've heard that endometriosis can "run in the family." I am personally waiting to see if I have endometriosis or not. I mentioned to my doctor while I was having my pap smear that I felt some bumps on my cervix and she said it looked like endometriosis. I just had a colposcopy with a biopsy and am awaiting the results. I don't suffer from bad cramps, just bleeding after sex once in a while. I've been trying to conceive for just over a year. If I were you, I would be completely straightforward with your doctor about your concerns. I tried to "suggest" to my doctor that I was concerned that I might be hypothyroid due to my really low body temperature and she then started talking about "weak ovulation," which I was not talking about at all. She was in a hurry, apparently, and wasn't connecting the dots. I am also supposed to get an ultrasound, but I have to wait until my period starts.

 

[Mollykins]

lolo81- I found, in my research that if someone in your family has it, you are 7 TIMES MORE LIKELY TO GET IT! I am really scared... since researching this, I've noticed that I've had some symptoms that date back more than a year ago... I hope that if I do have it that it's not too bad (i.e. caused me to be infertile).

When will you get your results back?? I hope soon and I hope it's all good news! FX FX FX Oh and why do you need to wait until AF arrives to get a u/s?

 

[lolo81]

Hopefully you don't have endometriosis, but if you do, I've read that surgery can help. Also, if you are interested in alternative therapies, you may want to read the book Making Babies by Sami David and Jill Blakeway or The Infertility Cure by Randine Lewis since each gives lifestyle advice for women diagnosed with endometriosis.

I think I'll probably hear back from my doctor next week. About the ultrasound, I'm not all that sure why I have to wait, but I think it's because there are certain abnormalities that are more apparent during that part of your cycle.

You know, I was really scared and depressed when my doctor first suggested that I had endometriosis, but now that a few weeks have passed, I feel a little more confident that things will work out no matter what. I'm really wishing you the best! Don't stress too much!