Hi fellow community members. Am here to seek help for my wife's diagnosis.
My wife (31) has a CA-125 level of 43. I know this is not very high, but the doctor suspects it could be an endometriosis and she recommended her to start on dienogest. Nothing was detected in her vaginal ultrasound. She also does not have pelvic pain but a general leg pain during periods. She also gets headaches during periods. We have a 5 yr daughter already and are planning to conceive a second one in a few months.
I am not sure whether the she really has endo or not. What should we do next. Should we go for another CA-125 in a month? How do we ensure that a correct diagnosis has been made?
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Thanks emmab178. The dienogest drug comes under brand names such as Visanne and Qlaira. I myself don't know whether it will just relieve some painful symptoms or will it even reverse/stall the endometriosis.
So should I watch my CA125 levels for a while or should i go for laproscopy straight away?
Hi there, I had a similar level of Ca125 (it was 46), it was found during initial fertility investigations when I'd tried over a year to get pregnant with no luck. The consultant suggested it could indicate endometriosis. I had quite different symptoms to the norm so a direct link wasn't made with endometriosis, however, I"d done a lot of my own research and with bad chronic fatigue/leg pain and back pain decided to go private and have a laparoscopy as that is really the gold standard to diagnose this condition effectively.
I wasn't familiar with that brand name drug you mention, however, they do have Visanne in Australia which I believe is similar. I was offered a prescription of it, but I'd not read enough good evidence or reports to be confident taking such a new drug so decided against it as there were very mixed reports.
I was found to have very severe stage IV endometriosis at laparoscopy, in fact the surgeon said I was riddled with over 20 years of it and it was very complicated surgery, so you just never know what is lurking I'm afraid. As soon as I had surgery my contact headaches and chronic fatigue disappeared, unfortunately I have a very aggressive form which has since come back. I only got about 6 months respite after the first surgery I had. However, after surgery I did notice my Ca125 level did come back down to more normal levels. I haven't had it tested again when my endo flared up, but I suspect it was raised again.
My advice, for what it's worth, is to have a diagnostic laparoscopy just to check what is going on, especially if you are planning to try and have another baby. May be better to see what's what, as if down the line, you do have problems conceiving, a consultant would probably suggest t may be due to the endometriosis and your wide would need a lap then to confirm it. May be best to get prepared and check things out now?
Hope that helps a bit. Good luck with everything x
Many thanks Sez73. May I ask did you even get an ultrasound before going for the laproscopy first time. Nothing came out in the ultrasound for my wife. Could it still be a serious problem that requires laproscopy for further diagnosis?
Btw, the drug i mentioned in my question is the active ingredient in Visanne.
I didn't have an ultrasound prior to the laparoscopy. Now that I know what was discovered at the laparoscopy, I think something would have probably shown up on ultrasound if one had been done as one of my kidneys was enlarged due to endometriosis adhesions wrapped tightly around the ureter (tube which links the kidneys to bladder) which was stopping my kidneys drain properly. I was also getting a lot of pain around my kidney area and it was excruciating when I sneezed which was the adhesions being pulled at by the pressure from the sneeze. I'd been fobbed off by my GP for years & he totally dismissed my back pain, leg pain & fatigue-I thought he'd just laugh at me if I said it was sore to sneeze, I wish I knew then what I do now!
Ultrasound still misses an awful lot though, it may pick up something but I wouldn't rely on it. It can often tell if ovaries are adhered to other organs which can happen but it doesn't give great detail. It will usually show up cysts on the ovary too which can often be endometriotic but not always.
Another option would be an MRI scan which does gives more detail - that can often pick up deeply infiltrating endometriosis, & sometimes adenomyosis (similar to endo but it appears in the muscle wall of the womb) however, MRI still may not detect the exact location or problems caused especially if the endo is lower level which can still cause a lot of pain too.
I know it seems dramatic but a laparoscopy is the only way to really see what is truly going on. I've lived in Sydney & the Uk and have seen the best endo specialist in Oz & one of the worlds best surgeons in the Uk and they both categorically recommended a lap to see the big picture and they can then plan a course of action.
In a diagnostic lap, if endometriosis is found, the surgeon will usually excise this at the same time. However, in my case, I a general gynaecologist did my first lap which wasn't ideal - when she saw the extent of the damage she had to hand over to a far more experienced endo surgeon who was luckily there at the time. I had 3 further surgeries and I made sure I only saw an endometriosis specialist due to the severity of my case - if you have stage IV endo with bowel/recto vaginal endo it is strongly advisable to see an accredited specialist, general gynaes often do not have the experience! (take a look at the BSGE website for more details) I've battled for 15 years and I would not go near a basic NHS surgeon for endo if it turns out to be serious.
In answer to your question, it could still be serious & a lap would give the best picture. You could go try and conceive and take a year to do it then find the endo is the cause so I'd try and check it out first if you're in the position to do so. That's just my opinion. Endo has plagued my life for 25 years & I couldn't unfortunately have children because it lay untreated for so long and caused untold damage. If I could go back I would have insisted on a lap straight away as soon as I suspected something wasn't right. It may seem over dramatic but I've seen how it can escalate.
Unfortunately if your wife does have serious endometriosis, then she probably would possibly need more surgery at a later date, that can be the nature of the condition. Especially if she chooses not to take any drug therapy if you try to conceive. I chose not to take any drugs to treat my endo for 6 years while trying to conceive naturally & had 5 cycles of ivf so all that flared things up ten fold.
I hope that's helped a bit, please do let me know if u have any further questions and I'll help where I can.
Thats super helpful Sez73. It must have been a very difficult experience for u. Hope things are looking much brighter now.
It just needs some bit of courage to go for a lap without seeing much pain or other symptoms. But I guess there is no other option if we have to be sure. I will see if our gynae is a specialist at endo treatments or not.
What would I do without such forums. Truly life savers.
No problem at all, glad I can be of some help. I eventually chose to have quite an unusual (eye wateringly expensive!) operation in 2015 after 15 years suffering very badly which finally brought some relief but it was very radical, 9hrs long & extremely traumatic & not for the faint hearted, that's only reserved for the last chance saloon cases which I'm sure your wife is certainly not so please don't panic!! Things are brighter than they were thanks v much for asking. You're never rid of it & tend to live like you're almost in remission so it's tough but we're made of strong stuff on this forum!
Yes, I appreciate it's a big step when there isn't much evidence of much pain but I'd have rathered had a lap much earlier and found out sooner as by the time I actually had it I was in a very serious way close to losing a kidney, it had also had a huge irreversible impact on my fertility by that stage. I admit I too would have thought it was a bit too radical a step years ago but knowing what I do now I wish I'd had it much sooner, the earlier u know the more time you have to plan treatment.
However, don't see it as too big a deal. It's done by keyhole, little camera thru the belly button and usually 2 small incision marks lower tummy which often don't even need full stitches. If purely diagnostic with no work done it would be over very quickly so she'd not be under anaesthetic for too long. Certainly get advice from a specialist though as I'm only just basing it on my own circumstances!
The biggest thing to check re any surgery - make sure you only get any endometriosis excised (ie properly cut out) and not lasered which a lot if surgeons still do. Layering simply skins the top off the endo - but you need to see it like an iceberg, it's not just the stuff on top which needs addressing, the roots need attacked too!
She may be fine to keep on going along just as she is, & her consultant may advise just to watch and wait, but I think if you wanted to plan a second pregnancy it may be worth doing the lap as endo can play havoc and better to know all is ok, but that's only my personal opinion.
Wish you both all the very best and just ask if you have any other questions and I'll do what I can to help.
hmmm, will speak to the specialist for a lap. Thanks for telling me the difference between a laser surgery and excision. I never thought of this as a question.
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what to do next??
Can this pain really be caused by endometriosis plus a cyst?
What else can I do??
Raised CA-125 and a cyst 
