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This is a discussion on Hi ladies - general ? about endo within the Endometriosis forums, part of the Trying to Conceive - Health issues category; I hope it's okay to ask this here since I am not actually TTC.
For the last 2+ weeks, ...
I hope it's okay to ask this here since I am not actually TTC.
For the last 2+ weeks, I have been experiencing a lot of pelvic/lower abdominal/lower back pain and went to the dr. for it. He sent me for a TV ultrasound and it showed a few things. The main marker was "moderate fluid in the posterior cul de sac". When asking my dr. about that, he said that it is "probably blood that is likely caused by endometriosis". He was very complacent about it and seemed a little non-concerned. Didn't make me happy to say the least. His solution? Put me on birth control after I told him I was not going on it (personal preference). So essentially, he left it at that. To say the least, I am seeking a second opinion, and am trying to find a dr. that can give me a definitive diagnosis, which I hear that having a lap is the only sure way to dx endo.
My question for all of you is how were you diagnosed? What were your symptoms? When it comes to sx of endo, I do have a lot of the tell-tale signs of it - painful intercourse (TMI!), painful periods, heavier than normal periods, etc.
The pain is consistent, and as I said earlier, radiates to my lower back (which can possibly be explained by the fluid in the cul de sac). It gets excruciating at times, that even Darvocet doesn't touch it. I may as well be eating Skittles!
I appreciate any input or advice you all may have for me. My dr. is obviously NO help right now. There were more findings in the u/s, but based on my research, none that I feel would be indicative of endo.
Thanks so much!
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Jodi
mom to a brood of beautiful boys:
Colby - 1994 | Mason - 2002 | Conor - 2006
...and sweet little Caden, born 9.13.07 weighing 5 pounds, 14 ounces
Jodi, you are more than welcome to ask questions about endo here, even if not TTC It does sound like endo to me. I was dx with stage 4 endo in July 04 but knew I had it a few years before. My symptoms were bad cramps during af and back pain. Sometimes painful intercourse too. The only way they can dx for sure is though a Lap, and I think you are doing the right thing by seeking a second opinion.
I hope that helped some if you have any questions please don't hesitate to ask us anytime. All the ladies here are very knowledgeable about endo.
Janay
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Janay-34 Dh-34
Married July 1999
TTC#1 since 2000
Stage 4 Endo, MTHFR
IVF#1 09/06 BFN
Thanks so much Janay! Yes, there were other findings on the u/s as well - thickened endometrial stripe (could be indicative of early pgy) as well as a "cystic area within the endometrial cavity, is an anechoic space measuring 7mm x 6mm x 8mm." They say that that could also be indicative of early pgy, but the odds are VERY slim that I could be pg. (TMI - dtd 2x in the last 45 days and were cautious). After extensive research on my part, the sx I am having, coupled with the u/s findings can alos mean an ectopic pgy. I had one on 2004 which resulted in a salpingectomy (left side) and that's where my pain is currently, so it seems unlikely. I just don't know! It's all very frustrating for me right now.
Again, I appreciate your reply and input very much!
__________________
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Jodi
mom to a brood of beautiful boys:
Colby - 1994 | Mason - 2002 | Conor - 2006
...and sweet little Caden, born 9.13.07 weighing 5 pounds, 14 ounces
I am sorry you are experiencing so much pain. I was dx via laparoscopy (exploratory due to infertility, not because endo was suspected), and I have stage III/IV endo (doc said that it is bascially stage IV, but just not spread on both sides, so that's why it is labeled stage III). My left tube and ovary were glued to my pelvis, and since the surgery I have a persistent endometrioma. My ureter is buried in scar tissue, and she couldn't get it, or all of my ovary, free. As for s/e, I have some bladder issues and sometimes bad pain around AF. I am actually one of the "lucky" ones that doesn't experience pain as severely, although hormone stimulation doesn't help and some months are pretty bad... not nearly as bad as what you are experiencing, though. Since I am TTC, BCPs are not an option, but that was what my RE was going to use after I finally had a baby. But, now I don't have that option because I have also been diagnosed with a clotting problem. There are a few treatment options out there, but BCPs are the common first line treatment. Lap followed by drug therapy of some sort might be worth exploring if you are really in pain. I think a second opinion sounds like a great idea.
Hi Jodi - I have stage IV endo - also dx by lap (which you are correct - it's the only way to dx for sure) in 2004. I really didn't feel that I had any symptoms until we started TTCing. In retrospect, there was probably more than I realized. My big thing was back pain. I never really got cramps per se, just a severe back ache with AF - and I also had some bowel issues - TMI!! - When we started TTCing and I couldn't get PG, my EX OB/GYN (aka - dumbass!) threw me on clomid without any real formal workup, and despite me telling him that I had noticed my AFs getting heavier and more painful. Clomid was like throwing gasoline on a fire as far as my endo was concerned... and that is when I knew I had a problem. I ended up seeing an RE - he suspected endo based off of my symptoms, IF and also my u/s was suspicious - a large cyst on my right ovary that would not go away, and also some pooling of fluid around my ovaries. When he did my lap, my entire cul de sac was full of blood and obliterated with endo, my ovary was embedded into my pelvic wall, and I had lesions on both my bowel and bladder.
I agree with Janay and Carrie that you should seek a second opinion. If a lap is recommended, I would suggest finding someone that specializes in endo - that way, if they get in there, and that is the case, they can hopefully do a good job of "cleaning you out". Dependant on whether or not you plan on TTCing anymore - I would even recommend possibly seeing an RE about it. At least in my experience, an RE is more familiar with treating endo, and also preserving your fertility.
As far as treatment options - generally BCPs are the primary treatment recommended to keep it under control. A lap can also help with pain control - they can use ablation therapy to burn off endo lesions, but for the most part, a lap is only temporary, and from what I've read, most women will experience a recurrence within a year of having surgery. That was also my personal experience (but I was also undergoing fertility treatments which seems to make my endo worse) . There are other things as well - there is a lot of lit out there on diet and endo - some thoughts are that endo may be fueled by hormones present in our meat and dairy products and that eating a diet low in meat and dairy and/or switching to organics may help to manage symptoms. Also, are you BFing your baby? That and PG can help. There are some other meds out there too - but I'm pretty sure the majority of them are hormonal in some way. The big one is Lupron which is a monthly injection, usually taken for a series of 6 months, that basically puts your body in a menopausal state and you don't have AF - the downside is the side effects - mood swings, hotflashes, etc that women experience with menopause. A more permanent solution is to have a hysterectomy.
I'm wishing you the best, and hoping it's not endo and that you get some answers and relief for your pain. Please feel free to stick around and ask any questions... we don't like to admit it... but we sort of are the "resident experts"
Im just peeking my nose in here! lol But I started having issues when I was 15 (almost 8 years ago) and I was put on like 10 different types of bc and none of it really worked soo I had lap done 4 years ago (almost 4 years after i started having issues) and that is how I was diagnosed. I had pretty severe damage to my right tube but since I had just turned 18 at the time they did not repair the tube. Now Im almost 23 and ttc I am back to having the pain and issues I was having before. So I am in the process of seeing a new Dr. (damn military insurace!) but the symptoms that you are having sound like the same ones that I have. I really hope if works out for ya cuz it sucks and the pain sucks too lol a week a month the only way I can function is on pain meds.. and the pain is constant! good luck to you!
Hello,
I was diagnosed by lapo in 1999 when my OB/GYN was just going in to remove a cyst and found endo. In 2001, I had a second lapo where the specialist went in to laser out more. Symptoms prior may not match because of the cyst but I had lower back pain, painful intercourse, and light periods.
After the lapo, I now have sever cramps but may be due to scar tissue. I will be TTC in August.
Good luck and hope you get the appropriate treatment.
Hi ladies - general ? about endo
Re: Hi ladies - general ? about endo
It does sound like endo to me. I was dx with stage 4 endo in July 04 but knew I had it a few years before. My symptoms were bad cramps during af and back pain. Sometimes painful intercourse too. The only way they can dx for sure is though a Lap, and I think you are doing the right thing by seeking a second opinion. 
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please let us know what you find out 
DH, 42
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Karen - 38
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