Endometriosis and infertility?

(19 Posts)
RJonezy Tue 27-Aug-19 16:47:37

Apologies if there is already a thread on this.

Has anyone been diagnosed or have any experiences with themselves or anyone with Endometriosis?

Does it affect Fertility?

I have been diagnosed with it by a Consultant at my local hospital as I went through some of my symptoms. I also had an Ultrasound scan (internal) which showed that everything looked fine with my womb and ovaries though!

If you are not aware, Endometriosis cannot show on a regular scan, you need to have various internal scans through your stomach which I have not had or been offered.

To be honest, the consultant I saw was not that formative! All I was told was when I wanted to ‘have kids’ to try for 6 months, any issues to come back… but then surely it could be too late?

A bit of background on me:

I am 26 YO

I have only ever had 2 sexual partners in 10 years (I was 16 when I started having sex…).

I have been on the pill since I was 15 (due to bad acne and was cleared by the pill immediately)

No children

Not had any STI’s

I am not looking to have children yet but from what I have heard, the longer I would leave having children the less chance I could potentially have?

Maybe I have it all wrong? I am not that clued up on it, I need to get on and do some google searching but wondered if anyone had any personal experiences?

Thank you x

OP’s posts: |
LittleLongDog Tue 27-Aug-19 16:53:32

It completely depends on the specific case whether it will effect fertility or not.

www.endometriosis-uk.org/publications <- this has really clear research into it that will hopefully help answer some of your questions.

RJonezy Tue 27-Aug-19 16:53:49

@LittleLongDog thank you thanks

OP’s posts: |
SinkGirl Tue 27-Aug-19 16:54:06

I was diagnosed with endometriosis in 2004, age 22.

Endometriosis can impact fertility but doesn’t always. Around 40% of women with endometriosis have difficulty conceiving. I had no trouble at all and conceived very quickly once we started trying.

You need a laparoscopy to diagnose endometriosis - it’s not a scan, they insert a camera through an incision in your belly button. This is done under general anaesthetic.

Do you even want a baby now? Having a baby is not a treatment or a cure. Unfortunately this is very old fashioned advice. My endo is much worse since having my twins.

drquin Tue 27-Aug-19 16:55:04

Short answer is yes, it will likely affect fertility. Getting pregnant is listed as one of the main complications of endometriosis on NHS website.

Obviously everyone is different, and not everyone will have same symptoms & complications.

But unfortunately you'd be better assuming you will have complications- and speaking to GP now (or sooner rather than later in a new relationship) for options.

RJonezy Tue 27-Aug-19 17:40:36

@SinkGirl I don't want a baby yet, not for at least another 3-5 years sad I have read about the fertility rate but wasn't sure how worried to be at 26.

Maybe I shouldn't be waiting too much longer just encase. Even though I'm not looking at having kids yet I can't think of anything worse than not being able to have them, for me I would struggle with that sadbear

OP’s posts: |
Lauren83 Tue 27-Aug-19 19:00:47

I have stage 4 endometriosis and didn't catch it until it was really advanced (deep infiltrating on bladder, bowel, pod, 15cm cyst and hydrosalpinx) I had 2 laps including the removal of a tube and my ovaries resected and then started IVF as I had already been trying a long time at this point, my ovarian reserve was terrible and I needed donor eggs in the end and eventually had a son last year after 9 years of trying. I would look at having an AMH and FSH fest plus an antral follicle count so you will have a better idea of where you stand

SinkGirl Tue 27-Aug-19 19:26:43

Unfortunately age has little to do with it, although all women’s fertility decreases as they get older. The difficulty with endo is that it’s very hard to tell whether you’ll struggle to conceive before you try - they still don’t fully understand why endometriosis impacts fertility (of course if your tubes are blocked / damaged or your ovaries are very diseased that’s an issue, but some women with mild endo struggle to conceive while women with severe endo sometimes conceive quickly - it’s quite a complex issue).

Absolutely stay on the pill until you want to conceive and have as few breaks as possible as this can help to control the spread of the disease.

It’s very difficult as pregnancy is absolutely not a cure and endometriosis is not a good reason to have a baby - I decided not to try for one until we were ready, I was 34 when I had the twins. As I said, my symptoms are much worse since. Having a baby is obviously a huge commitment, massive change to deal with, and I can tell you from experience that it’s not easy when you’re in severe pain.

I agree it’s a good idea to assess things via blood test to check your egg reserves as this is another factor to consider.

Personally I would be pushing for a laparoscopy to a) make sure you actually have endo b) treat what’s there and c) assess things such as whether your tubes are clear, ovaries normal etc.

RJonezy Tue 27-Aug-19 19:44:57

Thank you so much @Lauren83 so sorry to hear of your troubles but congratulations on your son.

OP’s posts: |
RJonezy Tue 27-Aug-19 19:46:31

Thanks a lot @SinkGirl

OP’s posts: |
Lauren83 Tue 27-Aug-19 19:49:55

Thank you, I did actually conceive again naturally when he was 8 months which was a huge shock so I have an 8 week old now too, my symptoms didn't seem to return in the 8 months before being pregnant again so will be interesting to see if they do this time. I see my surgeon this month again and he wants to do an MRI to see how things are looking

BonnyE Wed 28-Aug-19 07:36:54

Hi. I also have endo and ended up conceiving through ivf. I'd say stay on the pill (mini pill or combined with fewer breaks I believe keeps it at bay but don't take my word for that as I'm not medical professional ) and not worry about it - you're young! When you are ready give it a go (and have fun!) as you may be totally unaffected. But my advice would be to not leave it too long before seeking advice if you don't conceive. So maybe give it 6 months rather than the "usual" year? Best of luck x

Mrbay Wed 28-Aug-19 22:51:28

I was diagnosed with endo in my early 20s, at that point I didn't want kids so wasn't concerned about fertility. Fast forward, I'm in my 30s and having trouble conceiving so have started IVF. My consultant has told me that the endo has destroyed some of my follicles - I'm annoyed that I wasn't told that this can be one of the effects of endo as I would have had my eggs frozen.

I don't want to frighten you, but I wish I was told this.

I've had a lap and coil fitted (prior to TTC) best treatment for the pain and heaviness, 4-years of no periods or pain. The best treatment plan is to stop you having a period as this limits the cells shredding and sticking elsewhere in the body.

RJonezy Thu 29-Aug-19 06:51:14

Thank you @Mrbay, I was referred to for the merina coil I think it is so I think this is the route I'm going to go down.

OP’s posts: |
Sallyeva Fri 24-Jul-20 10:07:47

I was diagnosed with Endemetriosis at 21 and was told then I should have children sooner rather than later! Fast forward 11 years, 3 laparoscopies and 20 months of TTC. I've now found out my ovary is stuck to my uterus. It's so different for everyone dealing with this disease.
Stay on the pill- it helped my symptoms loads.

kikisparks Sun 26-Jul-20 19:16:20

I have endometriosis (Diagnosed by laparoscopy) and although my infertility is unexplained I’ve been told several times it is probably the cause. Doing my first round of IVF this month.

Thunderbolted Sun 26-Jul-20 20:40:22

I was diagnosed with stage 4 endometriosis (the worst) at 32. My only symptom was infertility - we'd been trying a year or so. We had 7 rounds of IVF, 5 fresh 2 frozen. Amazingly got pregnant on 7th go after 2.5 years. We tried for a other when DS was 2, with more IVF but it didn't work and I got sick of trying. Probably cost around 40k all in.

6 years down the line I'm very happy as a family of 3.

Yes, endo can affect fertility but even in the worst cases there's still hope.

user1479588581 Wed 26-Aug-20 22:09:27

Hi,

I've just read your message.

Please freeze your eggs now. I'm 38, and struggled to have my first at 33 and now been told very little chance of success with IVF. If I knew then what I know now I would have frozen my eggs much younger to give me the option later on.

milkyc Thu 27-Aug-20 04:28:46

I have read this post and would like to share my experience. English is not my first language. I hope u guys can understand what I write. I got the same disease and have consulted 3 specialists. They all said the best of curing is to get pregnant. I retrieved the eggs for twice and the quality of eggs were not very good (I was 35). But I was lucky enough to get my elder girl after 3 transfers. Then I had the ivf again when I was 38 and I successfully had my younger girl. The quality of the eggs were the best among the 3 egg retrivals. Don't be upset and discouraged about our age. Do have faith in ourselves! However, if possible, better to do ivf as soon as possible. We are racing with the time.

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