Endometriosis

Hey lovely. Firstly ?. I have been living with endo since 2005 so I know how overwhelming it is when you are first diagnosed. I don't know of any books but there is a fab website/forum called endo sisters which will tell you everything you need to know. You can ask as many questions as you like and it was a real help to me back in the early days! HTH. X

I can probably answer a few questions....

Ooh, ta will have a gander.

The main issue I have at the moment is the fertility issue. I don't have any significant symptoms & it was only noticed during a routine smear.

I have been told I've got deep rectovaginal endo. He said to me that the form I've got doesn't cause fertility issues, as opposed to superficial endo (causing adhesions primarily in the pelvic region) which does cause fertility issues.

The googling I did over the weekend seemed to imply that often deep endo causes more fertility issues than superficial.

I have just had an email conversation with my homeopath about it. I know you aren't a massive fan of some alternative therapies, & I respect that, but she has a lot of experience with female reproductive health & she confirmed my google research not the consultant's info which concerns me somewhat.

At this precise point in time, I wouldn't qualify for fertility assistance because of my weight.

To say I'm not a massive fan of homeopathy is an understatement. If people want to waste their time and money seeking pseudo-medical advice from a wholly unqualified person who - to be blunt - systematically lies about medicine and science in order to flog a set of products that do not work, have never been shown to work and have no plausible biological or chemical mechanism underpinning them, then that's their call. These people sell sugar and water as a cure for real, sometimes serious, sometimes life-threatening, medical conditions. The entire 'profession' should be banned and forced to walk the streets bearing signs that say 'I rob vulnerable people'.

When people turn to homeopaths instead of their qualified and expert medical care team, that's when they become dangerous.

You've googled and you've found some info that doesn't seem to fit with what your consultant told you. The right thing to do is mention those concerns to your GP or consultant, the next time you see them (or make an appointment to go in and discuss it).

I'm on the iPad so can't access/link to medical journals at the moment. But tomorrow, at work, I'll find some papers that might have some information for you. I hope that might help you shed some confusion - it must be a bit scary for you at the moment.

Just to say, I know I rant about this stuff but it's because I want what's best for you people. If I didn't 'know' you girls (and guys), I wouldn't care so much.

How did they find it? They told be they could only diagnose my by doing a laparoscopy which they did last year?

That would be much appreciated. Thank you

Rant away, I know where you are coming from on this given your career/background.

Mini, you are correct a lap is the only way to diagnose it when it's in the pelvic/abdominal cavity because you need to physically see it because MRI/Ultrasound doesn't correctly reflect what's there.

Because of the position of mine (in the tissue between the vagina & rectum) a nodule of it can be seen on the wall of the vagina near the cervix (hence it being spotted at a smear) & more nodules can be felt under the surface. I believe that endo in this position is the only form that can be diagnosed without invasion (lap or camera up the bum).

I used to have endometriosis and after a laparoscopy was treated with a course of injections, one a month for 6 months. I am not sure what they are called or what they are but they worked for me and for one of my friends. She had been TTC and her endo was diagnosed as part of investigations as to why she was not getting pregnant and she fell within about 6 weeks of the last injection.

Might be worth asking about them ?

OK, I've had a scan through a few papers. I will link to the abstracts, which might be the easiest bit for you to read, but have also provided a short sentence describing the research:

No proper data to assess benefit of surgery for low fertility associated with rectovaginal endo.
https://pubmed.ncbi.nlm.nih.gov/23446860/

Rectovaginal endo usually associated with pain but not necessarily decrease in fertility. Post-op conception is 40% with IVF, 25% spontaneous, but difficult to truly assess as the baseline fertility of the women in question not usually measured. (This is a meta-analysis paper i.e. it combines data from other smaller studies. These data are usually considered superior to the smaller studies).
https://pubmed.ncbi.nlm.nih.gov/22377155/

If needed, surgery should comprise laparoscopic excision, not resection (i.e. removing a chunk of) the bowel.
https://pubmed.ncbi.nlm.nih.gov/22268648/

Surgery incorrectly assumed to be the only treatment option, but pharmaceutical therapies not recommended for women wishing to become pregnant.
https://pubmed.ncbi.nlm.nih.gov/19574277/

Only 10 % of patients with rectovaginal endo but no pain/symptoms (asymptomatic) and with no treatment get worse over a follow-up period of 6 years. The remaining 90 % remain healthy with no disease progression.
https://pubmed.ncbi.nlm.nih.gov/15547522/

As I understand, you're asymptomatic (given it was only discovered on a smear test, suggesting you don't have any serious pain or bleeding issues)? In which case, I suspect (this is not formal advice in any way) your treatment options are conservative i.e. wait and see if anything needs to be done. There is no way of knowing whether this has or will affect your fertility, given that you haven't been assessed pre-endo. But I definitely know that your homeopath can't help you with fertility issues. Talk this over with your doctor.

Also, as a final note, perhaps this gives you really good motivation for a diet?

Thank you for the links ?

I already am & it's slowly working. Just need this weather to warm up so we can get out walking/cycling.

Hi, here is the complete guide on endometriosis . Hope this helps.