Apparently I have endometriosis

[CurlySue]

...though I have no clue what this means with regard to TTC becuase it was only a staff nurse reading through my notes before she discharged me.

Perhaps somebody else spoke to me. I have no clue. But, after being kept overnight (anti nausea medication does sod all for me, it seems) and being woken up at 5.30am this morning (have to do observations at half past five, don't you know?) then waiting hours to be discharged it was not the doctor that did it but a nurse.

She read the notes from surgery and said the following: -

1. Tubes clear. Uterus healthy.
2. No lesions or adhesions on the right side (where pain originates)
3. Multiple spots of endometriosis on left side, uterosaccral (I think that's what she said) ligament and the Pouch of Douglas

I asked, would any of that be the reason why I am not pregnant, yet? She said, it might be, I don't know. Your tubes are clear, though, so I would say that was fine. You can discuss it at your follow up appointment. In six to eight weeks time.

So, really, aside from knowing that I have endometriosis (though not sure if its mild, moderate or what) I'm still none the wiser!!!

 

[FJL]

Holy hell, I cannot believe the UK's poor excuse for a medical system, it makes me so mad :angry: just assuming you are from the uk!

6-8 weeks is a LONG time for you to wait not know how severe your endo is, Drs certainly don't think of the psychological effects all these tests and waiting have on women and couples.

I don't know what to say hun, all I can do is hope and pray for you that your tests come back (the ones where you actually get information ) as best they can.

Thinking of you

 

[CurlySue]

A friend has told me that it must be on the lower end of the scale or else someone would have told me. Its shite isn't it? She (nurse) said that because tubes are clear and uterus is healthy there should be no reason for not conceiving but, I still haven't, and there was multiple endo spots. What are endo spots? What relevance is this Pouch of Douglas?

I suppose you can see where I would be a little confused. Only hearing half a story, I mean, and then having to wait weeks until I hear the full one.

Do I get fertility drugs? Do I get anything of the sort? How are they going to help me get pregnant?

Just don't know anything. I really hoped that I would at least be clear on things right about now but I'm just not

 

[rachelle1975]

That is very poor i'm so sorry hun.

If it's any help my friend has endo and pcos which was affecting her ttc. She did have lesions in her tubes and so they lasered them and then she became pregnant. I know endo can have an affect on ttc depending on where it grows so if your tubes are okay then that is a positive sign? i would make an appt with you gp to discuss it with them since the hospital were so dire. Fingers crossed x

 

[bird24]

I found out in May that i have mild endo....if its not over your ovaries or tubes then normally its ok....

How long have you been ttc?

I cant believe no one came to explain.....although when i had mine they explained just after my op and i was still half asleep at the time so i couldnt remember much but they did come round again in the morning....

xxx

 

[maz]

I found the medical definition for Pouch of Douglas :

Douglas, pouch of: An extension of the peritoneal cavity between the rectum and back wall of the uterus.

I don't quite know what impact it has on conceiving, but I would imagine that if it is outside the uterus then it may well be able to spread to other parts. If I were you I'd phone the hospital and ask to speak to a consultant and say you're worried by what the nurse told you - which was very little but enough to concern you.

Good luck hun

xx

 

[Helen_26]

Ask your GP to retrieve your results and talk it through with you. My GP is doing that for my HSG results, otherwise I would also have to wait until mid September at the earliest.
I wish that these so called health professionals would think before they open their mouths.

 

[CurlySue]

Thanks for the explanations.

I don't know. I just know that it has been well over 12 months (and if you count the length of time I've been off the pill well over two years I reckon) and I'm STILL not pregnant. I get bad periods, irregular as anything, and that is why I went for this lap.

I am pretty sure nobody spoke to me when I woke up because I was (to put it mildly) fcuked. In bad pain, on morphine and all kinds. Then the whole being sick thing, added to the incredibly fast pulse rate, nobody really concerned themselves with speaking to me about the actual findings. Then, when they did, as you can see, it was bare minimum information.

Six to eight weeks, she said, for the follow up. I suppose I will just have to deal with that as there does not seem to be much information passed between GP and hospital in these parts.

 

[loopylew]

that really is terrible hun, id go to your GP and ask for more answers x

 

[Loula]

https://www.endometriosis-uk.org/

check this out

 

[Faerie]

Hi, I was diagnosed with endometriosis aged 20 in 2004 after years of "problem" periods. Unfortunately it's a little known disease, and many Drs in the UK (and the rest of the world) haven't a clue - before you have any surgery to remove it please make sure the surgeon in charge is an endometriosis specialist, as my first surgery was messed up thanks to me not knowing much and putting my trust in Drs. I've been very lucky with my treatment in Switzerland.
Some people have thick layers of endometriosis but never know until they can't get pregnant. Others like me have patches, but because of their position it can be crippling. Mine was in my bowel and pelvis. I was treated (and so far it hasn't come back) with hormone therapy which brought on a temporary menopause and acupuncture, followed by two pregnancies (which didn't survive, but I really think they helped clear up the endo).
Having endometriosis doesn't mean you're infertile, there are changes you can make in your diet that help, and many different treatments to consider. I would be wary of surgery as it can cause more problems - I had surgery to remove my appendix in 1999 and the surgeons here think that one fallopian tube subsequently became blocked from debris left in after surgery and endo grew on that(I had it removed last April). Apparently the blocked tube was causing mc as it was flooding the uterus with poison.
When I moved to Switzerland, I noticed even before starting treatment that the change in my lifestyle, ie a lot less stress, really made a difference to my condition.
Annnnd pregancy often erradicates it, one of the best cures It's not 100% foolproof, I know it comes back for some people even after pregnancy, but for a lot of people it stops it forever.

 

[Faerie]

Ok, erm, that was a bit long and rambling - but feel free to ask questions!

 

[CurlySue]

Thanks Faerie.

Apparently I have the endo on the left side, the uterosaccral ligament and the pouch of douglas but the dye flowed through my tubes without any problem.

The notes said "multiple spots of Endometriosis" but like I said, I do not know what that means.

Spots. Would this be just that? Spots? Or does he just mean in multiple locations? I just do not know and its bothering me because why give me an outline of what was found and not tell me what it means?

 

[Faerie]

I hope that you get some answers soon. By spots they mean small patches in different locations rather than all over an area. It sounds like your endo isn't causing any problems as yet, and as it's in patches it probably isn't likely to spread very quickly.

 

[CurlySue]

I hope that you get some answers soon. By spots they mean small patches in different locations rather than all over an area. It sounds like your endo isn't causing any problems as yet, and as it's in patches it probably isn't likely to spread very quickly.

Can that change? Does it grow?

 

[Faerie]

I don't know how much it can spread, or whether you're predispositioned to have a certain amount. I only ever had small patches, just in a number of places (including in scars from previous ops), and it spread to my bowel, which I think is quite abnormal.

According to one of my books "The Endometriosis Natural Treatment Program" there are 4 medically categorised stages:

Stage 1: Minimal disease - Top level or "superficial" implants, few in number
Stage 2: Mild disease - Deeper implants, greater in number
Stage 3: Moderate disease - Many implants. The ovaries are affected to some degree. There is scar tissue - seen as filmy adhesions
Stage 4: Severe disease - Many deep implants. Large endometriomas on one or both ovaries. Thick scar tissue adhesions.

 

[CurlySue]

I would imagine mine is Stage 2, then. It's not on the ovaries, that much I know, but it is behind the uterus.

 

[bonfloss]

I really hope that you get some answers soon.
xx

 

[CurlySue]

I will get my answers on 17th September - OH's birthday.

 

[magicvw]

Jeez I can't believe you have to wait so long for answers. That really sucks