Hello, I was diagnosed with endometriosis early last year. My gynocolgist suspected it so I had an MRI which indeed confirmed his suspicions. Obviously we don’t know exactly how bad it is unless I have a laprascopy, but it’s believed to be in my punch of douglas area.
Anyway, because the endo doesn’t give me a huge amount of trouble, except for painful periods, my gyno and I agreed not to do anything about it for now and if my husband and I have problems trying to conceive, then we’d start looking at treatment. Well, surprise, surprise, we have been ttc for 9 months now with no luck. I know I haven’t given it very long but I just know we are going to have problems because of my endo My gyno doesn’t it’s necessary to look at treatment until we have ttc for one year, but I am 34 and my husband is 39 and I don’t want to postpone any longer.
So, basically, I have a few questions that I really hoped I could get some honest answers for. I think I am annoying my gynocologist with all my questions, so really I am looking for reassurance elsewhere. I really hope you guys can hep me. This is on my mind all the time Here goes:
1. Obviosuly the MRI was not able to give any information as to what stage my endo is, but I am assuming it is deep endometriosis if it showed up on the MRI (I am led to believe stage 1 & 2 don’t show on MRI). Also the fact that it is in my pounch of douglas makes me think it’s pretty bad… Am I jumping the gun or assuming correctly?
2. Each month, usually after my period, I get pain when urinating, which lasts a few days. I know it’s dangerous to self diagnose, but I am wondering if the endo has now got into my bladder. Is that another indication that I have it really bad?
3. If my husband and I decided to have IVF, would we have to have a laprocopy first? I thought that with IVF, the embroys where put straight inside the womb, which is unaffected by endo, so why would a lapascopy be necessary first? Please correct me if wrong.
4. THE IMPORTANT QUESTION!!! Has any one here been able to have children despite having deep, or stage 3 or 4, endo?
Sorry, I know I am asking for a lot of answers but I really want to talk to people who know what they are talking about!!
Thanks so so so so much in advance to all you lovely people.
Stephanie
xxxx
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LaurenGCan1980
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Hiya, I don't have answers to all your questions, but I can answer a few.
2. I too have pain urinating and I was diagnosed with endometriosis on my bladder (among other places). My gyno never told me what stage I was at, maybe because I was diagnosed and treated in Canada and they don't do stages there? He did say I have extensive endometriosis.
3. I don't know about IVF and whether it is better to do the lap before IVF, but usually there are varied reasons for not getting pregnant and I would explore all options to make sure the IVF has the most chance for success.
4. As I said before, I have been diagnosed with extensive endometriosis and was treated for this. This was eleven years ago. Since then I have had two successful pregnancies, and I have two wonderful sons. They are three years apart and before I got pregnant with my second son the endometriosis had returned and I was actually scheduled for a second lap when I got pregnant. So that is my success story. I did also do a lot of acupuncture to help get pregnant.
Hope you get all the help you need and stay strong!
Hi! Thank you so much for your quick reply. I am very happy to hear that your have had two lovely boys. This gives me hope. So you have endo ON the bladder but not IN the bladder (as far as you are aware?)
I am not aware of endo IN the bladder, but I had my lap eleven years ago so I am not sure how things are right now. Considering the amount of times my urine tests showed blood in the urine I may have endo in my bladder now too.
Thank you so much for an excellent response. I couldn't have asked for more! The link you have supplied is excellent.
So perhaps the reason why I have painful urination is because the endo is ON my bladder, and not necessarily inside it? (which terrifies me)
So if I had a lap for peritoneal endo to increase my chances of conceiving, would they leave the deep endo alone then (on bladder and pouch), or does it ALL need to be removed to improve chances? Must all laps be done at specialist endo centres or just the ones that deal with the deeper, more complicated procedures?
Are there any women out there that you know of who've conceived naturally, simply tried for a while and it worked, with stage 3/4 endo? Or is that just really unlikely? I just don't understand why my doctor told me to go off and try for a baby for a year when he knows I probably have it quite bad. Surely I've just wasted time?
I am in Norway actually, but I am English. We move back to England in 2 years but I would like to get the ball rolling here, as Norwegian healthcare is excellent and I hear so is fertility treatment.
I'd def go ahead with the lap and have the Endo removed, your chance at ttc naturally or with ivf is improved by having the treatment. Make sure the op is carried out by a specialist surgeon at a bsge centre for the best outcome, General gynae won't treat pod Endo properly and can't touch the bowel.
The op isn't as bad as you think, and in most cases you are back to normal in 6wks (you'll be out and about after about 2-3wks). I had 2 laps with general gynae, then 2 with specialist along with 2 rounds of prostap all of which I believe restored/conserved my fertility.
1. Pod Endo is as you've correctly assumed not awesome - it can cause damage to the bowel and most of all a lot of pain. Things like nodules/bowel infiltration will show up on Mri.
If your consultant is not urgently calling for treatment then I would take that as a good sign; though I would ask to have some explanation over exactly what was seen. In terms of fertility Endo is usually more disastrous when it mangles the ovaries, in my case it was always pod, bowel, bladder, ligaments, upper gi that were mainly affected. My ovaries only had flimsy adhesions by third surgery so seemed to not be too damaged.
2. I'd say your bladder may be involved as I had the same symptoms; don't worry they can remove the Endo and get it back to normal in the majority of cases.
3. Endo can alter the position of the reproductive anatomy which can impede conception, what it also does is increase prostaglandins/inflammatory mediators ie altering the uterine biochemical environment, making it less likely that an embryo will implant either by natural means or ivf. Hence its better to get it sorted as ivf is a lot to go through and you want to have the best chance.
4. I have stage 4 and concurrent adenomyosis. Had six yrs in and out of hospital and was incredibly worried about my chances. We were both very proactive and did a lot ourselves to improve chances - fertility acupuncture, Endo diet, bbt tracking/my days app, lost weight, both off alcohol and on pregnacare preconception etc etc. All of this kept us busy and helped with stress. We started ttc a year ago after coming off pill/prostap, had two early mc (v common with Endo) but fell preg in October 15', almost there now! We were meant to be having baseline ivf tests in Nov so it was in a way bizarre as we'd felt like we were doomed a bit. Since falling preg I have read so many similar stories so keep fighting. I think the key is to hit it with everything you've got medical treatment/holistic therapies/determination. Then at least you will have the peace of mind that you have tried it all. That's the way we thought about it anyway.
Remember to take time for yourselves, still have romantic get aways and do the stuff you enjoy.
Ps have just read you're in Norway - I'd get going with the treatment too, have heard v good there. It's important even for your own health to have any deep Endo removed from your bladder and bowel as leaving it it will only get worse and could cause significant damage. Also - think about it this way, Endo tissue in the abdomen grows and then breaks down under hormonal stimulation during the month - say you have the peritoneal Endo removed - there will be tissue healing there that is particularly vulnerable to new Endo growth setting up camp again - leaving the pod stuff gives a ready source for cell migration back to where Endo has just been removed if you see what I mean? Clear the decks of all of it and you can heal in peace and take the pill/hormones to prevent recurrence for a few months before ttc. Removing it all will also reduce the inflammation and give you a better chance of success.
Hey, thanks so much for your helpful messages. It sounds like you have had a tough time, but how encouraging to know that you got there in the end
Yes the healthcare in Norway in very good, and so is the fertility treatment (supposedly). My gynocologist actually specialises in Endo, studied in Guildford, and that's why he suspected it pretty much immediately. Perhaps knowing this I should have more confidence in him - that he wouldn't send me away to try naturally for a year if it was a waste of time and he didn't know what he was talking about.... :/ Hope so anyway!
Hi! Thank you for this update. I hope I don't sound dumb, but I am a little confused :/ If I understand correctly, you are saying that surgery for deep rectovaginal endo should only be performed if you are in a lot of pain, because it is a risky procedure. So basically, having surgery for deep rectovaginal endo will not increase chances of fertility (because it isn't located around the reproductive system), so it's best to leave alone unless it's for pain management. Is that what you are saying or have I got that all wrong? :/ And if this IS correct, then what is the best route for me if the problem IS fertility and not pain? How would I best increase my chances of getting pregnant?
I actually wanted to ask you this anyway - is it possible to have deep rectovaginal endo and the endo NOT be all over my ovaries/fallopian tubes? So just because I have deep rectovaginal endo doesb't mean that my reproductive system is a mess? Or does deep rectovaginal endo mean I most likely have it everywhere else, inc my tubes etc.
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My gyno doesn’t it’s necessary to look at treatment until we have ttc for one year, but I am 34 and my husband is 39 and I don’t want to postpone any longer. 
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