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Original poster

Endometriosis concerns - terrified

36 replies

Poppins88 · 04/02/2021 19:22

I have been experiencing mild to moderate pelvic and lower back pain for a few weeks at the end of my period since late November '20. A few years ago I can remember feeling pain during sex but I put that down to how infrequently my partner & I had sex and how unaroused I was. I went to see a doctor and was diagnosed with IBS. Other than that, periods are a bit light but not unusually painful and no other symptoms. I was told today by my doctor that he thinks I may have endometriosis and he is referring me to a gynacologist. Its broken me tbh. I have always had a fear I was infertile since I had a termination when I was 19 and this feels like literally my worst nightmare coming true. I'm single atm and was going to try and get back into dating, I was already feeling apprehensive that I'm not much of a catch (don't own a house, 33 e.g.approaching mid thirties, history of depression/anxiety) and if I'm going to have fertility problems on top of all that I can't imagine anyone wanting me.

Not sure what I'm looking for. Is there anyone who has experience of this and can offer some guidance/advice perhaps?

OP posts:

Wherearemymarbles · 04/02/2021 19:43

My wife had endometriosis. Undiagnosed for years. It was a scan on her back that picked it up not her effing useless gp.

Anyway we have 2 children and no problems conceiving. Its not a death knell for your fertility

ReySky · 04/02/2021 20:03

I have endometriosis (took 10 years to diagnose after being dismissed as IBS etc) and my naturally conceived 13-month old is sleeping next to me as I type. Obviously it can affect fertility, but it's not guaranteed, and I know of lots of other women with endo who have conceived without fertility treatment.

Best of luck with it all and I'm happy to chat if you need to x

Flibbertygibbertywoo · 04/02/2021 20:12

I have endometriosis, mine is stage IV which is basically my entire innards are gummed together and I have deposits all over my GI tract. I had an endometrial ablation to stop the blood bath bleeding, I was anaemic for 20 years, have bloating issues and digestive issues. I was only diagnosed at the age of 38 after a lifetime of problems.

Regardless I have fallen pregnant 4 times and produced 3 children. Honestly endometriosis isn’t always linked with infertility, I’m not at all unusual.

Don’t panic yet! Get treatment, endo just gets worse with time and can’t be ignored.

Doyoumindifislytherin · 04/02/2021 20:17

Another Endo Warrior here with 2 beautiful naturally conceived children. Only way a formal diagnosis can happen is via a laparoscopy. I was fobbed off for years as having IBS and it wasnt until I had an embedded coil removed that it was discovered.
There are treatment options out there to relieve symptoms but its trail and error on what works for you.

Maidofdishonour · 04/02/2021 20:27

I’m another endo sufferer that had two naturally conceived children (literally fell pregnant instantly with both). Please try not to worry.

mineofuselessinformation · 04/02/2021 20:29

Your termination has absolutely nothing to do with having endometriosis, so please try to stop worrying about that. And if you feel you should blame yourself because if it, don't.
Many women have endometriosis and still go on to have successful pregnancies. (I did.)
Just hold tight for now, until you get a diagnosis either way.

2021mumma · 04/02/2021 20:29

I have endometriosis and only found out after having my son. I had a laparoscopy last year and am now pregnant again. Ask to be referred to a BSGE consultant who specialises in endometriosis and start looking into what stage it is at etc. Please don’t lose hope. There is a Facebook group join that many women have had children.

user1499189583 · 04/02/2021 20:31

Stage IV endo here and have had 4 pregnancies and 3 kids. Please don't worry too much, it's not a fertility death knell

Original poster

Poppins88 · 04/02/2021 21:25

Thank you for all the responses and advice - I appreciate it. I have a tendency to always think the worst due to anxiety and generally having quite bad luck. I'm going to try not to panic until I know for certain but the more reading I do, the more certain I am that's what this is. Its great that so many of you were able to have children, I'm very concerned that any prospective partners I might meet would be put off from the outset if they know I may have complications or difficulty conceiving.

OP posts:

Gazelda · 04/02/2021 21:33

In another long term endo sufferer.
Met my DP when I was 38 and presumed I wouldn't be able to conceive. Was at the point of having fertility investigations when I fell pregnant naturally at 39yo.
I don't think anyone decent would be put off dating you purely because of endo diagnosis.
Keep positive.

Dery · 04/02/2021 21:43

Just reinforcing PPs: I have two friends who had babies in their late 30s despite having endometriosis. There’s every reason to believe you’ll be able to have children too.

Countrywalking · 04/02/2021 22:03

Sending you hugs as I understand how horrible this must be for you.
I was hospitalised for a long time last year with suspect Crohn's or diverticulitis (though I don't fit the criteria) anyway it was finally discovered I had an infection in the bowel and all due to endo
I am at stage 4 meaning I'm riddled.
I get very unwell with flare ups and I have inflammatory bowel disease.
So 1. Be kind to yourself, remember to rest when you're tired and to let work know you have an sometimes debilitating illness

My gynaecologist said that endo, regardless of the severity does not equate to infertility.
the right person will not be put off by your illness but they do need to be understanding when you get unwell. Would you date someone who had fertility issues? If you liked them enough I'm sure you would and if not they're not meant for you get to weed them out early on. My husband says no matter what we will have a family. 4. My advice is not to talk to friends about infertility especially those who have kids.
I'm a very anxious person, I'm 37 and TTC for the first time. For me it helps to think about all different scenarios and it makes me calmer to think there are options, because there are.

Goodluck x

Charlottie01 · 04/02/2021 22:06

Please read ' Expecting better ' by Emily Oster. Do not worry x

2021vibes · 05/02/2021 10:00

Another endo sufferer here and I have 3 naturally conceived children and just had an early loss last month so doesn't necessarily mean infertility issues, although my first baby did take a few years to conceive but there's no way of knowing exactly why that was, the next 2 were very easily conceived and the loss was a woops pregnancy. Stay positive and look into different hormone supplements you can take, I find b6 worked great for me and also looked at agnus castus when I was trying to conceive.

Original poster

Poppins88 · 05/02/2021 13:12

I have ordered the book suggested above and I am already taking B6 but will look at Angus castus, thank you for taking time to respond everyone :)

OP posts:

Namechange600 · 05/02/2021 13:19

Another one with stage 4 endo and adenomyosis. 5 pregnancies and 3 kids.
Had problems for 20plus years including infertility, pain and 2 miscarriages but only diagnosed recently. One thing, with endo you can feel very ill around ovulation time and I am convinced that’s why I struggled to conceive initially.
Good luck-definitely possible to conceive even with very severe endometriosis.

Iamneverfull · 05/02/2021 13:22

I have endometriosis and have 2 children.

Original poster

Poppins88 · 09/02/2021 12:15

Hi everyone, I've been told I'm going to have an MRI scan, is there anyone who might be able to give me an idea of what to expect?

OP posts:

One1 · 09/02/2021 12:38

Hi Op,

I’ve had an MRI scan in hopes to find definite signs of endometriosis. As far as I know the only way of diagnosing endometriosis is surgery. An MRI might show signs, but may not show anything at all. In my case I discovered other non related issues.
You are basically placed in a tube for approximately 40 min and you need to lay still on your back while enduring some really loud regular sounds. I guess they will provide you with ear defenders. I remember they gave me a NoSpa pill before the scan as well. The machine will then “slice” you up, ie will take photos of your pelvic area. Imagine slicing a trunk and taking photos of each slice and then stacking them up to see the entire trunk. It’s exactly the same with an MRI scan, only the machine has the ability to see through you.

ColdBrightClearMorning · 09/02/2021 12:47

I have severe endo, have had a couple of laparoscopies and ablations. Most recently discovered one of my tubes is permanently blocked and can’t be salvaged. We conceived two weeks into trying and had a healthy baby nine months later. Endo can make having a baby more challenging, but the key word is ‘can’: it is not a guarantee. Plenty of people without endo struggle to conceive too. It’s hard but worrying about it won’t change your chances or what’s going on in your uterus. The best thing you can do is learn strategies to manage your worrying because that is going to have a really negative impact on your life whatever happens re kids!

I was upfront with DH from the start and told him on the first date that at 28 with endo I was looking to start trying within a couple of years either alone or with a partner, I didn’t want anyone wasting my time in a relationship with an expiration date. Even at his age then (24) he got it and understood that time wasn’t on my side and felt it was sensible, mature and appealing that I was decided on what I wanted from life and determined to go for it as best I could. He isn’t some rare unique bird, just a decent guy. They’re out there. I heavily encourage you to be upfront and honest about wanting kids relatively soon when dating, and at 33 perhaps start to look into what it’d look like to have a child alone and whether that’s something you’d consider, it might help to ease some of the panic if you have a plan in place that you will start trying around this time whether you’ve met someone or not. I don’t know if I would actually have gone ahead and TTC solo, it’s hard to say, but I know that planning to and researching it gave me a lot of confidence and agency and meant I wasn’t remotely desperate or blinkered when dating, I only considered guys who I seriously felt were going to be potential fathers for my children and husbands. No time to waste. Good luck, I know how utterly terrifying it can be to be unsure whether you’ll be able to have a child or not, I encourage you to seek as much support and tools to get through this as you can.

Original poster

Poppins88 · 09/02/2021 14:16

Thanks for replying, I'm really hoping the MRI doesn't show anything and this is something else as I don't honestly think I can cope with the anxiety of not knowing whether my fertility has been affected (I appreciate noone ever really knows) but trying to stay positive.
I don't feel ready to date yet for various reasons but being upfront about wanting children is definitely the approach I'll be taking when I do. I wouldn't consider being a single mum but thank you for your advice :)

OP posts:

ShonC · 02/03/2021 19:47

@ReySky

Best of luck with it all and I'm happy to chat if you need to x

Sounds just like my experience too! So glad you conceived naturally

Original poster

Poppins88 · 30/03/2021 13:01

Hi everyone, I've gotten my results back from MRI and I'm a bit confused by what I've been told. The lady said I have a small fibroid on the lining of my womb, she was quite dismissive about it and said it was nothing to worry about. She then said, "Good news, we didn't spot endometriosis on the MRI, so we'll just keep you on progesterone and no need for a laparoscopy." When I challenged that and explained my understanding was that you very rarely find endo on an MRI and I need a laparoscopy, she said, "OK we'll do a laparoscopy and a hysteroscopy but we might not find anything and it can be a very dangerous procedure so we're not keen on doing it but if you insist..." I'm now left feeling that I'm overreacting/putting myself at more risk by pushing for a lap but all my research tells me you can't diagnose endo any other way?

OP posts:

One1 · 30/03/2021 14:18

Hi op, I have a fibroid as well, I was told it was going to be left untouched. They also discovered polyps inside my uterus, a couple quite large, which I am waiting to have removed as I am writing this. My doctor was quite laid back about last time I saw them for the hysteroscopy, they mentioned in passing if I wanted a coil fitted in today, only because it helps. Not a proper discussion about what my options are, pros and cons, I was left to google it. A doctor from what I know will not suggest surgery just for the sake of it. My friend who has already had it, discovered that her endometriosis was stage 4 and had a lot of scar tissue, which gave her a bit of head ache with the following pregnancy. Hope this helps.

Tarttlet · 30/03/2021 16:05

@Poppins88 laparoscopy isn't particularly dangerous, what a ridiculous thing for the doctor to say. It's keyhole surgery so minimally invasive. Please do go ahead with the laparoscopy, if only for your own peace of mind.

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