spotting/endo?

[smamfa]

hi there,

i get spotting before af every month (usually for 6 days, sometimes more), and i was reading the other day that this could be considered the "most predictive symptom" for endo??? i don't have any other symptoms (no pain etc), but read that you can have endo without knowing it. (i originally thought i might have low-prog but got this measured last cycle and it was good.) any opinions?

[Mumszword]

It can't hurt to follow up with your GP or Gyno. Spotting can be a symptom of endo but may not be the only cause so you are best speaking to your doctor. The doctor may order an utrasound - I found an internal one was more accurate than an abdominal one. I had had a number of abdominal ones over the years and I was told that there was nothing showing. A year ago I went for another one and was a little naughty - I forgot to drink the water in time and it ended up in me having to have an internal one. - But it was a blessing in disguise as what the external abdominal did not pick up the internal one did and after a year on the public health waiting list and finally having a Laproscopy (SP?) I was diagnosed with very severe endo requireing immediate surgery.

The only way to tell for sure that you have endo is by having a Lap as far as I know.

HTH

Good luck.

[Angelwings11]

I agree, I didn't have any of the painful part of endo(other than period time) until I turned 40 and ended up having it quite severely. There are so many symptoms it's crazy; different in all women. I would advise seeking a Gyno that specialises in Endo, it can go undetected for years. My girlfriend didn't fall pregnant until 40 because no Gynos that she saw specialised in it. She now has 1 and 1 on the way.
Best of luck
Linda

[smamfa]

Thanks

Linda, it is nice to hear about your friend's success after eventually dealing with the endo.

Well i have seen a specialist - she thinks it is quite likely that i do have endo, and recommends a laparoscopy to find out. I can have one next month - eek! I am not sure whether to go with that or to put it off for a little while...

i know some people with endo conceive without problems, but i can't help but think that if i am spotting from 5-7dpo, that it can't be very good for my chances of implantation. so i should probably just have the lap asap... but then again i am a bit scared! and we have not been trying for that long... but then again we are starting a bit late, so i don't want to dally....

oh, and i had an internal (and external) ultrasound the other day, which didn't pick up anything.

[joel's girl]

A lap is the way to go dear. And don't worry an u/s would not detect endo they really need the lap to definately say it's endo. I know it sounds flipant but laps are not that big an operation - I've had seven and on all but one occassion it ws day surgery and apart from having some period type pain for a few days it was fine. Although Im aware that I'm at ease with hospitals and surgeries (after many years of same) and that you and other ppl may not be.
I wish you all the very best for your lap and be sure to let us know how you go. It truly is a wonderful way to get some answers and so the doctor can advise you in the right direction as far as TTC goes.

BTW if it is endo, unless it is treated you may continue to have difficulties but after the endo is removed most doctors suggest that your chances of conceiving are greatly increased. So there's another good reason to go get it done ASAP.

Again good luck,
Cindy

[smamfa]

thanks Cindy - I am thinking I will have the lap next month. it feels a bit strange to be planning a surgical procedure - the only time i have ever had an operation/been in hospital was when i had my appendix out at 15 and that was an emergency so i wasn't really aware of what was going on at the time!!

maybe this is a silly question - but how long does it take after a lap before you can bd again? does it mean that cycle will be a total bust and i will have to wait for the next one before ttc again?

also, congrats on your pregnancy
sam

[Shanti]

Hi girls
How much is it to see a gyno that specialises in endo for eg? I don't have private health cover. just medicare.

i am concerned that i may have Endo as on the weekend, when DF and i had sex, it hurt twice, both times on the weekend that we DTD it hurt... sorta like as he thrusted in and out so we changed angles and that helped (sorry TMI) but it was still kinda sore... up in my abdominal area right side kinda like my appendix... i am due for my AF today too... so kinda have minor menstrual cramps but thats normal... never hurt during sex before so its new to me and never had Endo, PCOS or fertility issues etc so i'm a bit worried.
anyway i too have heard the only way to know for sure is a lap so i might see a gyno first to get advice?!?! and info.... what you girls think?
is the waiting list long in public?!?! if i need one? i could just be jumping the gun and may not be anything wrong wiht me could be part of PMS or somethting but its new to me so i am concerned and want to get it looked at as we are TTC#1 very, very soon and dont want anything wrong with me!!!

[smamfa]

Hi Renstar,

First you have to go to your gp to get a referral if you want to see a specialist. i went to one dr, who basically told me not to worry and to come back after 6 months, but i was still worried, so i went to another dr the month after and she gave me a referral. she offered me the choice between a general gyno/obst (who would be able to take me through pg as well), or one specialising in fertility (but i would have to find someone new once pg.) I chose the latter.

I had 1 appointment which cost $160. They charged for DH as well, but bulk-billed him. I will get some back from medicare, but I don't know how much.

I think they bill some from medicare and some from my health fund for the lap, and I could have one pretty immediately (in a few weeks), sorry but i don't know about public waiting lists.

goodluck, i don't know much about painful dtd, although i think it could be due to a few things? maybe you could start recording when/if you get any symptoms like this so that if you do end up seeing a specialist you have evidence to show them. i took heaps of info in with me charts/info from the web etc, and was already to stick to my guns and ask to be checked for endo, but the fs suggested it first up.

[satya]

Sambo63 - I'd be getting the lap done. You can't muck around with your fertility after 35. I started TTCing at 28 & my FS thought I might have endo but none was found when I had the lap..... I'm still TTCing at 41 (I did have a few years off when my marriage broke up). I've had spotting before AF for as long as I can remember but my progesterone levels seem fine as well. A lap is not a huge deal usually so it would be best to go get it done.

Renstar - I'm waiting for a lap in the public system now. My paperwork from the hospital told me it would be about a 12 week wait - I think I've been waiting 8 weeks now, but I'm a category 2 patient due to my age. I had a lap done about 10 years ago and I think I only waited about 2 months even though the FS told me it would take about 6 months.... I guess I got lucky..... not so this time. By the way just one episode of pain during sex doesn't mean anything, sometimes a lack of foreplay can result in pain. Just keep an eye on it and if you think you do have a problem see a gyno.

[Shanti]

thanks Sambo & Satya for your advice

Satya, yes it only has happened the once (well, twice) on the weekend... we didnt do much foreplay (sorry!) so maybe thats also why?!? i am trying not to worry.... still waiting for AF to arrive shes 3 days late too but that could be my body still regulating after stopping the pill 4mths ago so yeah its still organising itself very frustrating!!

thank you... if it happens again in the next 2 weeks and then again i will see a GP for referral...rather be safe than sorry seeing as we are TTC#1 very soon

[Mumszword]

Hi girls
How much is it to see a gyno that specialises in endo for eg? I don't have private health cover. just medicare.

i am concerned that i may have Endo as on the weekend, when DF and i had sex, it hurt twice, both times on the weekend that we DTD it hurt... sorta like as he thrusted in and out so we changed angles and that helped (sorry TMI) but it was still kinda sore... up in my abdominal area right side kinda like my appendix... i am due for my AF today too... so kinda have minor menstrual cramps but thats normal... never hurt during sex before so its new to me and never had Endo, PCOS or fertility issues etc so i'm a bit worried.
anyway i too have heard the only way to know for sure is a lap so i might see a gyno first to get advice?!?! and info.... what you girls think?
is the waiting list long in public?!?! if i need one? i could just be jumping the gun and may not be anything wrong wiht me could be part of PMS or somethting but its new to me so i am concerned and want to get it looked at as we are TTC#1 very, very soon and dont want anything wrong with me!!!

Ok heres how it has played out for me so far and I don't have private health insurance and cant afford private hospitals........ It took many many visits to countless gps before I got a referal to a gyno specialist..... he was a general gyno with some specialist experience in the area of infertility and endo. He initially cost $160 for first visit. (not including costs of ultrasounds and pap test) - Can't remember how much I got back from medicare but there were out of pocket expenses. He suspected maybe minor endo??? and suggested a LAP which could be done privately and would cost $1000's or I could go onto the public waiting list..... This was a difficult one because of my age and as my pain at the time was severe but I could not afford private surgery costs. So I went on the waiting list which was 10-12 month wait. I finally had the lap in May this year.

The specialist was planning to try to fix what ever the problem was while doing the lap eg: minor removal of endo if he found any..... well needless to say he was in for a major shock...... he basically opened me up and took lots of photos and closed me back up. This was when I found out that I not only had endo that had gone undiagnosed for many many many years but it was that extensive he stated the best he could do was a full hystorectomy and it was the worst case of endo that he had seen in the last 20years I then had followup appointment with him and I think from memory that was about $140 too.

He then refered me onto one of the leading surgeons in the field as he knew I wanted to preserve fertility. I saw him almost immediately but that was another I think $260? from memory ( But money definately well spent). He agreed that surgery was basically my only option regardless of if I wanted to preserve fertility or not as it was becoming debilitating. Also because of the severity and progress of my endo it has been deemed as requiring major surgery sooner rather than later. As I can only afford to go through the public health system I am on a standby waiting list and have a scheduled date for surgery in late September. The specialist I am now seeing has been a God Send to say the least and that I am thankful for his help and willing to wait to ensure that I have someone who has the expertise and skill to be able to improve my chances of TCC and improving my quality of life. I have also had to see a bowel surgeon which cost another $200+. I have had to see a cardiologist in preparation for surgery too not sure if this will be bulk billed..... I am keeping an eye on the letterbox in the next few weeks. Blood tests and other tests so far have all been able to be bulk billed.

My advice to you is if you really suspect endo - try to get a referal to a gyno who has had experience in diagnosis and dealing with the disease. First step is to get a diagnosis and this will mean minor day surgery (having a Lap).

If they find you have endo then chat to your specialist and see if they are equipped to deal with it. Also chat to as many people as possible who have had experiences with doctors and endo treatment. Also google Endo and read as much information as possible in your country/state. The more information you are armed with the better you can decide what treatment is best for you..... As there are many different options of how to treat and results are not all the same and some give more lasting relief than others.

Remember that all is not lost if and when your forced to go through the public health system. It may take longer to get a diagnosis which may or may not be something you are willing to wait for depending on your age and severity of your symptoms. If you have endo I would definately try to find a very reputable and reliable endo specialist as this can make all the difference to your outcome.

Good luck with your search for answers - I hope you get things sorted soon.....

take care....

[smamfa]

well guys i have booked the lap - 22 August. (i've decided not to think about it and instead look forward to the days off work where i can watch trashy tv.)

mumszword - goodluck with your surgery in sept - it sounds like you are in good hands with the specialist you have now.

[Shanti]

Wow what a story, thanks for sharing it Mumsword. I am hoping I dont have Endo. It was just the once off pain during DTD so i have been told only to be concerned if it happens regularly. i will see a doc next week to talk about it and go from there. i dont want to scare myself or talk myself into thinking i have Endo for one thing.... i have self diagnosed before and it got me no where.
good luck with your surgery in sept, it sounds like you've been through a lot!!! how old are you??

[dusty]

Sambo - well done on booking your lap. i hope it gives you answers and solutions too! i have been through both PHS and private (see my journal for more info). you have been given excellent advice by the BB chix - ask lots and lots of questions.

Mumszword - Best of luck in September. You have had such a rough ride and it sounds like you are getting better care now. Hugs to you :hugs: and thank you for sharing your story with us.

Renstar - happy TTC to you and your DF

Satya - i hope you don't have to wait too much longer and goodluck with your lap

dusty