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Happy/positive/encouraging stage 4 endo stories!!!!

70 replies

Kate8989 · 11/05/2018 17:50

I’m absoltuely desperate for the above.
I’ve recently been diagnosed with an obliterated pouch of Douglas, also cervix and top of vagina stuck to bowel.
I’m 28 years old, had a miscarriage a couple of months ago. I was only diagnosed with endo 14 days ago.
I’m feeling very overwhelmed, I’ve decided to have a second surgery to rid what they can then try for a baby.
I don’t find the Internet forums on endo very useful. They’re so depressing and downbeat. I know millions of women have this disease and I get it’s shit but I’m just looking to hear from some lovely ladies with positive stories
Thank you so much in advance xx

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Kate8989 · 15/05/2018 21:38

@TammySwansonTwo- it will be a different specialist for the second one. I am prepared to be under for a bit longer 😑.
Oh bless your heart, how old are you if you don’t mind me asking? That’s a good idea having another lap to tye you over xx

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unlurk85 · 15/05/2018 21:47

I have stage 4 Endo. Obliterated POD, recto vaginal septum, uterus fused to bowel at the back and large deep nodules on my bowel. I've had one lap and then had two children naturally (they're 4 and 1). Conceived in 5 months first time and 10 months second. Drs were stunned, convinced I was going to need IVF but no need.  It's not all doom and gloom! Good luck @Kate8989

Kate8989 · 15/05/2018 21:50

@unlurk85- 😍😍😍 that’s a wonderful story thank you so much. Your endo sounds exactly like mine!!!! I’m hoping excision then falling pregnant will help me 🤞🏻. How did you find the lap? X

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Kate8989 · 16/05/2018 17:17

🙋🏼‍♀️

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Kate8989 · 16/05/2018 17:23

Anyone had endo infiltrate the nerves? X

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Kate8989 · 17/05/2018 08:31

Bump- for anyone who wants to join me x

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unlurk85 · 30/05/2018 19:40

Sorry @Kate8989 I completely forgot to reply to you. The lap was painful I'm not going to lie. You'll need someone to look after you for a few days. It didn't help that they played it down beforehand; "just exploratory, will remove anything if we find it, in and out in a day etc". Then they removed loads and I felt like I'd been hit by a train. But it was good practice for my two caesareans!!! GrinHappy to answer anymore questions (if I remember this time!!). They may try to give you the worst case scenario but it doesn't always work out like that GrinWinkThanks so keep your pecker up.

Kate8989 · 30/05/2018 19:45

@unlurk85- thank you for getting back to me. What did you have done in your last lap? During mine I was under for about 1hr 30min- some endo lasered away and A LOT of adhesion division!!! Mines all in my bowel, pouch of Douglas, uterosacral ligaments. I have a nodule 😢 makes me sad just listing it down xx

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unlurk85 · 30/05/2018 20:54

@Kate8989 they excised a lot of the adhesions which I think was the painful bit and then did some lasering too. It was 7 years ago now so sorry that's a bit vague! I have a nodule on my bowel and hey didn't touch it. They tried to persuade me whilst I was still on the ward recovering to have a laparotomy with bowel re-section as soon as I had recovered. I'd need a colostomy bag temporarily etc and as I was quite young still I couldn't bring myself to do it. I'm glad now as the pregnancies and breastfeeding helped relieve symptoms for a good while (although they're back now Angry). X

Kate8989 · 30/05/2018 20:59

@unlurk85- the next lap I have is excision so im hoping that will give me long term relief. I’m very much in the headspace at the moment that they can do whatever they need to do to sort me out.... I just want to feel better and have as much endo taken out of me as possible. You can tell I’m not dealing with the diagnosis well ha ha x

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unlurk85 · 30/05/2018 21:36

I'm not sure there is a good way to deal with the diagnosis; it's the shittiest of shitty sticks. I do hope the operation gives you some relief. Two things have sprung to mind when I was thinking about my Endo and TTC. When we started the 2nd time, I used one of those cycle tracking apps after we'd had a few months of no luck. By doing this I discovered that the days I was probably ovulating and therefore more fertile were the most painful days of my cycle (after my period obviously). This was a horrible discovery as it meant that we had to dtd on days when I was in a lot of pain. I would NEVER EVER advocate anyone having sex when in pain or 'against their will' but for us that was the shitty reality. Very upsetting for me obvs but also for DH. Just another indignity that cunty bollocks Endo brings.

2nd thing was more positive. If you do manage to have a baby and also manage to breastfeed, you may get a lovely glimpse at what life would be like without Endo. My pregnancies were crap for other reasons, but breastfeeding was a true true joy. I was completely symptom free, had loads of energy and just felt physically wonderful (despite the sleep deprivation!). It really was the best of times. If someone could make a pill with that particular combination of hormones in, I'd give everything I had for it. Little git self-weaned at 8months and I'll never forgive him for that WinkGrin

Anyway sorry for the mixed bag of advice. There is positivity in my experience it it can also be a complete cluster fuck too. Big hugs. Xx

Kate8989 · 30/05/2018 21:48

@unlurk85- I appreciate your honesty. I know millions of women live with the disease, it’s still very early days. I was only diagnosed 4 weeks ago and in that time I’ve started Zoladex and arranged my next op. As well as trying to come to terms with the diagnosis and also process the MC I had earlier in the year. I don’t know how I’m keeping it together.
I think if this op can give me a better quality of life then it’s a no brainier and I’ve had so many people tell me they felt like a different person. I’m being seen by an endo specialist who only does excision. I want as much cut out as possible by someone who knows what they’re doing. I get terrible stomach pain even when I drink water it’s horrible. I can’t even relax and have alcohol as that triggers the pains. Sorry for the rant it’s nice to have someone to talk to xx

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unlurk85 · 30/05/2018 22:03

It really does sound like you've been through the mill. Throwing a MC in there too I imagine just makes it harder. Even though it's awful, i suppose it does prove that you can conceive, so something in there amongst the carnage is working. Smile It sounds like your specialist will do you proud; the idea of chopping it all out is very cathartic isn't it? Like being cleansed! I also get the alcohol thing too as it feels like I have a UTI or something, little stabby pains. Can't even get shitfaced to block out the pain ! When is your op?

Kate8989 · 30/05/2018 22:10

@unlurk85- Absolutelty, people think I’m mad putting myself through such extensive surgery but I love the idea of it being cut out of me 😂.
My consultation with the surgeon is in 2 weeks then should be able to book the op. Yes people say well it’s good you managed to get pregnant but I worry what made me MC.
I’ve been drinking a lot and just putting up with the pain. It relaxes me and takes my mind off things (temporarily)
Are you going to gave anymore surgeries? X

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TheDayDreamBeliever · 31/05/2018 12:51

I had a lot of surgeries and paid for it with resulting adhesions. I wouldn't advocate having say yearly surgeries like I did unless you're still TTC & the endo / adhesions are bad. Ooh when you have the consult ask if they use anything to try and prevent adhesions, also ask whether they use stitches or glue. I had a few where the stitches were meant to dissolve but never did. I found the glue a lot better.

Ask if you were to get an endometrioma if they put you on clomid, what would the plan of action be, as you know someone who had that situation and it made intercourse uncomfy.

I was the person who said pretty much avoid forums & the spoonie thing on IG as you'll be left feeling deflated.

I've not been about for a bit so any questions please let me know.

Kate8989 · 31/05/2018 13:12

@TheDayDreamBeliever- thank you so much for all that info, I do really appreciate it.
I have done my research and found a specialist who only does excision so I’m hoping that will provide long term relief rather than having constant surgeries. The endo is quite bad at the moment and I don’t really have a quality of life so I’ve got to do something as I want a baby and feel this is my only choice.
Can I ask did you have surgery for endometriosis?
I’ve been really good and stayed away from the forums. ESPECIALLY health unlocked as that’s just pure doom and gloom. I keep reminding myself my experience will be different to everyone else’s so I can’t keep reading all these Internet horror stories and think that will be my life xx

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TheDayDreamBeliever · 31/05/2018 13:34

Yes I had quite a few surgeries for endo, but it can and does come back.

I'm on IG and the women who pretty much have themselves defined by endo is shocking. I truly know it's a nasty disease, but once you've had your family, there's medication that does work.

I do have problems from endo but I truly believe that it shouldn't be the sole focus of my life. You have to look for the positives, as hard as it can be at times.

I'm lucky really that I grew up through the forum era & all that jazz. As it's allowed me to get a sense of what some people can be like. I think the most important thing with any illness is to look at any new symptoms as being independent from endo, until it's proven that it definitely is the cause.

The young girl who got grazes on her legs or had nose bleeds and convinced herself that her endo was possibly even on her brain (though it was conjecture, she got the usual PMS headaches many of us get.) really was the final straw in me trying to help people that way.

I can see why pain relief is needed, but when there was the oxycodone fad, I thought it had really gone way too far. As obviously you develop either addiction or tolerance, neither are nice. They pretty much convinced themselves that they were in pain constantly at a very high level, to justify the painkiller use.

Kate8989 · 31/05/2018 15:23

@TheDayDreamBeliever- I am letting the endometriosis be my new identity as I’ve forgotten who I am. I’ve felt crap physically and mentally for so long that I’m letting it beat me. I decided to write down how I feel today so I can see it in black and white... This is what I wrote- disgusted, ashamed, ugly, resentful and vile. They are pretty strong emotions I’m conveying there so. I can’t see me turning the corner and accepting what I’ve got. I don’t want it so how can i live with it? X

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unlurk85 · 12/06/2018 22:04

Hey @Kate8989 thought I'd check in to see how you're doing? I've just read your last post which really touched me. Those are very strong words, although I can understand you're struggling with the diagnosis. Is there anyone you can talk to about this? Maybe professionally? I had some counselling through an employee assistance program at work (it was unrelated to Endo, was for a bereavement) but we talked a lot about my Endo and it really really helped. Just a thought, it's not for everyone. When something is as painful and scary as this, it's easy to let it dominate your life, but if you can find a way to process it and make peace with it I hope that will help. SmileThanks

NatD85 · 06/02/2023 11:24

Hi, I know this is such an old thread and I’m not sure if you still have access, I was just wondering g if you had a positive outcome?

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