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

[Kate8989]

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

Not myself but 2 friends had successful pregnancies after surgery for endo. One conceived naturally and now has 2 kids. The other has had successful IVF and is due any day. Hope you get you BFp soon.

@HidCat- thank you, how old are they? Are they on Mumsnet by any chance? Xx

I had stage 4 and had extensive excision, tube removal, ovaries resected etc, I had it all over bladder, bowel, pod etc. Had a baby in January (with donor eggs)

My endo was only discovered after I had my eldest DC via IVF (I also have PCOS which prevents me from ovulating - I average 2 periods a year). At that point I was told I had 0% chance of conceiving naturally. I then fell pregnant around my DS 1st birthday after not having a period for 5 months and now have 2 DS’ 1 year and 9 months apart. The consultant that delivered my second said she couldn’t believe it a) had happened naturally and b) wasn’t ectopic so I guess he was meant to be.

2 DC making me go grey. Conceived with clomid. Took patience, both times it was when I'd given up on the idea that it happened, so I do believe stress and making it clinical doesn't help your body. I don't know how you'd do IVF/ISCI without it being clinical.

But literally last doses of clomid, no opk's, no stressing over the 2ww, I have only 1 tube, so in my heart I thought no chance. I remember doing a test after a few minutes it was negative and I got myself a glass of wine, went back to the bathroom & it was a strong BFP.

They do say always read in 10 minutes, but I'd tore enough tears apart to know that it was no evaporate line. I even studied the mechanics of the clearblue conception indicator test for my test dismantling antics. Not advisable, but I'm sure I can't be the only one in this club.

Best of luck x

@Kate8989 both were 36 when they conceived.

@Lauren83- that’s fantastic! Congratulations... there is hope for me then. I need to stay away from health unlocked as there are no encouraging stories on there like that. Just all doom and gloom. It’s a very hard diagnosis to take aswell so it’s helpful for me hearing positive stories
Mama05070704- that’s wonderful thank you for sharing that story! Can I ask where you had the endometriosis? That’s something else that concerns me, doctors saying “it will never happen” kind of thing but you are living proof amazing things like that can happen.
@needingamiracle- thank you so much for sharing that. It blows me away what women have to go through and I suppose when I was on the pill I naively thought it would be easy making a baby but oh wrong i was. This endo diagnosis is a real stumbling block at the moment but hopefully after my second surgery I’ll feel a lot better and want for try again.
@Hidcat- thanks for that, definitely gives me some hope for the future then 🤞🏻.

It’s still very early days with my diagnosis. Lots to get my head around.. Preparing for a second surgery whilst also thinking about trying for a baby. My head feels like it’s going to explode 🤯.
I just want to get back to my normal self, I cannot believe how much the pill can mask as I had ZERO symptoms on that. Had the odd bowel issue but surprise surprise told by the docs I “had” IBS!!!

Xxx

I also feel majorly in denial like I don’t want this so I won’t accept it. Which is not helping me to make positive decisions moving forward... x

@kate8989, I have all over both ovaries, my tubes are stuck to the back wall of my uterus and my bowel is also heavily affected. I’ve had bowel problems and severe pain since I started my periods at 11 (I’m now 35) and was fobbed off until they eventually diagnosed with PCOS in my 20’s. I told them repeatedly that I suspected it was endometriosis and nothing was ever done 😔

@Mama05070704- similar to me then. The greatest problem is my bowels and obviously because they get used everyday (sorry to be crude) but I suffer from daily pain. It’s a nightmare, I’m trying to find triggers and have eaten really naughtily the last few days and found the pain to be a lot worse. It doesn’t help I’ve also had first period since Lap and that was only 14 days ago 😴. My stomach looks like a dartboard at the moment.
I’ve had my fill of doctors through this whole experience and I now know you have to push if you want to be heard and sorted out. They will not do it off own back. How old are your lovely children? Xx

@kate8989 I noticed a big improvement when I cut out dairy and soya. The problem I have now is that the endo on my bowel is so extensive, no consultant will touch it due to risk of further bowel damage. My 2 DS’ are 1 and 2 (almost 3) so they keep me busy. X

Mama05070704- so I’m guessing you have already had excision on your bowel? I obviously haven’t had mine touched yet so all I can ask them to do is what they can and hope it reduces the pain. I can’t carry on as I am at the moment x

I don't want to get shot for saying this, but I think you'll find endo forums generally really scary places. You've got stage 4 endo & didn't know, there's many women who have aggressive endo and don't know.

Others suffer, but you find those who post on forums are essentially making there life about their illness. You have the spoonie movement on IG. I found it so depressing these mostly girls/women analysing every little thing. Whereas my leg could drop off and I'd be oh dear that's not meant to happen. I have lots of complex illnesses and I was taught from a young age be you not your illness.

Ok if the pain was raging I'd be fine having a sulk as I'd be in agony, but for some people every minute of every day is their illness as they get attention from maybe family, more attention from their friends. But ultimately it has the downside that your friends are mainly eventually going to be other people that suffer, then all you see is bla bla this is wrong, bla bla that is wrong. If that's how people want to live that's up to them, but I was so pleased to see a girl who gets really life threateningly unwell say actually I've got to have my life back, I've got to close this account and focus on normal life.

When there were UK endo forums it'd be a competition to see who was on the craziest meds. If one person had a symptom not usually associated with endo you'd get within a month 5 people going oh me too.

The most absurd thing I saw I think was maybe someone who was sure they had endo in their whole body, even their nose, as they had a nosebleed on their period.

So this is why you want to stay away from sites like that as generally when you're new you won't know how things roll, it can be scary reading someone is on the strongest prescribable painkiller. Then you'll find as it appears competitive that others go to their GP & say hey this isn't working to see if they can join what they see as a I've got it worst club.

You conceived with endo and there's many out there who only find they have endo upon c section etc. After having several children.

I'll come back with some super positive stuff.

Globally 1 in 10 women have endo, many don't know. You can have someone with severe disease not know & someone with minimal disease in agony, due to microscopic endo.

Symptoms widely vary from person to person. I had say stage 2/3 endo when I was TTC but I also have PCOS and auto immune diseases.

What you could do is ask your GP for a hormone check. I think it's between day 3-5 if your cycle, then they call it day 21 progesterone test, but it should be 7 days after ovulation and not every woman ovulates on day 14. You can buy OPK's really cheap and they do work, I'd stay away from the pregnancy tests though. Basically collect a small amount of urine from cycle day 9 till when you get a positive, then get your progesterone checked 7 days later.

Also get your clotting factors and thyroid tested, as if you're even slightly hypothyroid it can affect conception. Get these things out the way now as you'll know say 2 simple tests are sorted. So ask for your TSH level and I think it's if it's over 3.5/4 then you might want a small dose of thyroid meds for when trying to conceive. Same with clotting, if that's an issue many women get along fine with baby aspirin.

If you've got a follow up with your gynae ask if he checked your tubes, did they look ok? Was there any sign of PCOS, blood panels will also show PCOS too. So they can get you on meds for that.

Ask if you could benefit from clomid, it won't hurt to ask. That month if they agree, whenever you take it they'll likely do a scan just to make sure it's worked and you've got a follicle.

I'm sorry if my last post sounded mean to some others out there, but endo doesn't have to take over your life. Obviously if you get other symptoms check with your GP or gynae, as a lot of people think, I've got endo this is obviously related, it could be, but it also could be something different.

I suffered from when I first started my periods with really heavy painful periods. I'd have to sit in my form tutors class room at break, the pain was that bad. So I had obvious symptoms that something wasn't right. Then I had pain during sex, that with my periods knocking me out sought my female relatives to come to my GP and say something isn't right, I was diagnosed at 18/19.

So it isn't all doom and gloom I promise you.

@needingamiracle- I love you!
That’s just what I needed to hear, thank you so much for that.
I can say catergorically that going on these forums has made my life worse as it has struck a deep fear in me. I’m scared of every ache, pain, movement.. I never used to be like that. I feel like my body is a bomb about to go off any minute.
Yes I hate the pain, I don’t want to live like this but I am on a road to treatment - which I was feeling really positive about. Then I STUPIDLY went on the endo forums and the word “hysterectomy” kept coming up and that has sent me right over the edge. My brain is ready to explode 🤯🤯🤯.
I feel the forums have TOLD me how to live. Admittedly some days I feel like doing nothing but I feel everyday I should be depressed, miserable and defeated because that’s what an endo diagnosis “does”.
Please keep the positivity coming, it’s needed xx

I had stage 4 endo - had two laparoscopies, then had my daughter via IVF. We had other infertility stuff going on, so the IVF wasn’t because of the endo.
But, before knowing I had endo I had my son - with hindsight it was obvious i had bad endo, but I was oblivious. It took 10 months to conceive him.
There is hope, so you have everything to be hopeful for. We were told that we would basically never have another child after ds due to the other problems. I grieved for the child I would never have, but they let us try IVF simply to humour me I think. My dd is proof that miracles do happen! My advice would be to try to accept the diagnosis - after all, you’re in a stronger & better position now that you know what you’re facing. Be as positive as you can be, and who knows what might happen 💫
Good luck!

@needingamiracle- my tubes were confirmed clear during my laparoscopy. I was also checked for PCOS and I don’t have that. My ovaries were also free of endometriosis.
My endo mainly is bowel related which does scare me a bit with the risks but obviously I didn’t choose to have it live there.
Have you gone onto have children? I’ve just turned 28 and feel times ticking a little x

@Chintaria- thank you so much!!! Giving you a virtual hug- I love all the positivity.
Can I ask where your endometriosis was located? I’m a bit scared by the fact it’s all in my bowel. I should have known really after years and years of bowel troubles. The doctors reassured me it’s “just IBS”. But we trust these professionals as why wouldn’t we? I’m obviously a bit more switched on now and I tend to push things with doctors as they don’t want to investigate anything.
Xx

If you're suffering with no doubt see your GP & tell your gynae, so hopefully for them days you have medication like cocodamol. Take it when you need it as you find you come unstuck as I saw on the forums, when you take it every day, which inevitably leads to dependence, then it looks like they're looking for justified reasons to keep taking the meds.

Ooh this hurts, ooh that hurts. But realistically this did hurt, but only for an hour at a random point.

I don't want to sound smug but I had a ruptured cyst, it was hell on Earth, I got in the bath and had some paracetamol and ibropufen, by the time NHS Direct as it was, called back, the pain was a lot more manageable from the beginning where I couldn't move.

You read about others in similar situations dialling 999, being blue lighted to hospital, morphine drips, all sorts. I had to be readmitted to hospital after a lap due to a 1 in a million problem, it was similar to childbirth. I had a blood clot that got infected but I do have other health stuff. I was kept in for say 5 days on IV antibiotics. I have never known as some claim, for emergency laparoscopies to be carried out just for endo.

If there was a reason for an emergency lap it was the problem I had in my P.o.D. but surgeons really do prefer conservative treatment before opening you on a whim. So if you've read about people going in for emergency surgery I would bet on them wanting to rule out an ectopic or post miscarriage surgery, than just for endo pain.

I have had quite a few miscarriages, but that's more to do with auto immune stuff than it is endo. But before we had tests my Grandmother gloriously told me that you wouldn't really know you were pregnant till you got a bit of a bump, or you were regular as clockwork and you had no periods for several months. Not to downplay the pain of any miscarriage, truly I understand, they generally start worrying or doing more tests when you're on your 3rd.

But I think for any woman the blood coagulation check and thyroid check is so easy, if that was a factor get it checked now.

Some say it's a big cliche, but I did feel confident that I got pregnant naturally then nature was a beep than needing say IVF/ISCI then it happening. It does still hurt, no matter how you conceived but I would also take it as a positive if you can.

Also they don't advocate having a hysterectomy due to endo, as endo can grow back after or you can have issues with adhesions. So it's by no means a cure, I'm shocked that people are still spreading this myth that it's a way of abating endo.

Have you had your iron levels checked as that could cause fatigue. Especially given what you've been through.

Sorry I've got 2 children, I would say if you're in a position to try, do it.

Bowel endo sounds scary, it would only really be an issue if you were getting bleeding passing stools during your period, or any problem passing stools. Resection is the usual way of dealing with badly affected bowel, so it's rare you'd need a bag.

In all my time on forums which is a while before say FB etc, I don't think I can recall anyone needing a bag after endo on the bowel. They will advise you of everything at your preop, the risks etc. The biggest risk from surgery is adhesions, so that's why I'd try soonish if you can. If you can't then again I wouldn't worry, they're always making advances.

I would ask your gynae if they have an interest or specialism in endo, as they'll know more about it. Although what you get advised by medical professionals can still be out of date info.

@needingamiracle- I’m sorry to hear about your miscarriages. They are horrible and wouldn’t wish that experience on my worst enemy.
My problem is fear, i genuinely fear my body at the moment and the story you gave about the cyst.. i would have been crying in the street with panick to get help.
It’s just so much to get my head around, I never suffered on the pill. Even pre pill I had no problems so I guess I’m a bit in denial. I’m also not certain where most of my pain is coming from, I have a lot in pouch of Douglas and I know that’s a painful spot. I’m not in constant pain so it’s judging when I get a wave of pain is it worth taking anything.
Im coming to the end of my first period since Lap so feeling more tender than I was straight after lap xx

@needingamiracle- I do get rectal bleeding on period 😢. I never knew it was a issue but obviously it’s not normal.
I’m too uncomfortable to TTC at the moment. I need an op before I can even think about having sex or TTC...
I’m going to an endo specialist centre, the gynaecologist is one of the best in the country x

@kate8989 no, I haven’t had any excision surgery. It was only spotted 3 years ago and now it’s too far gone. I’ve seen 3 consultants so far and they’ve all refused to touch it. X

@Mama05070704- ahhh i see. I suppose they won’t know how bad mine is until they look. I’m going to ask them to remove what they can (safely) and hopefully it will give me a better quality in life and put me in good stead to produce a little bubba!!!!!x

Ive had quite a few surgeries, it’s not as bad as you think. It depends what they do as to whether you’ll leave theatre with a drain, I had one and you couldn’t tell it was there. When they took it out I think I let a trainee do it for the first time, I had no pain at all, so was really surprised.
One thing I would say is if you do have a drain, make sure they don’t take it out too soon, that’s how I ended up with a haematoma in my pod, everytime wind went down there or the slightest movement I was in agony, literally having to hold the couch and squeeze it. For that I needed stronger pain relief, as it was really painful, but it’s not a risk they tell you about so it must be really rare.
If they do have to resect then you’ll know after surgery as you’ll be bil by mouth, then fluids, then soft foods. So they’ll make sure you heal ok. It’s very rare I think that they put a bag in. I’ve not ever really seen it on forums, I’ve only seen it once. I’ve had say 8 laps in total.
You want to avoid scar tissue which is why they’ll be anti surgery. It can be frustrating but I’ve not had surgery in nearly a decade, but I do have problems with my bladder and bowel, but I’ve got problems elsewhere that could explain them, or it could have been the clot in my PoD that damaged nerves, I don’t really know.
The fact you’re under a specialist is really good, I think they have 4 months to recall you, so I’d say you’d have surgery in the next 3 months.
Out of all of them I was sore, but only 1 where I’d say I was in pain if that makes sense. A few days resting post op you should be ok. I tried to go back to work after a week, but 10 hours sitting & moving about was too much really. So I would take at least 2 weeks off and judge yourself how you feel.

If you have any questions don’t hesitate to ask. There’s lots of treatments, the GNRH meds are a lot further down the line generally. I was lucky I guess my cyst burst at home, realistically we should have sought immediate help over NHS Direct, but a hot bath and normal pain relief did work. So that’s a positive. Like I said unless they suspect an ectopic it’d be rare they’d do emergency surgery. I think you have to remember that for some people they get enveloped in the whole illness thing. So life doesn’t have to be that bad.
We all cope differently so for what’s ok for one person, might not be for the next. If you watch out on forums you will spot trends etc, so if you think of all the millions affected across the world, you’re only seeing a snapshot of a few people. I’d like to think I’m pretty honest about how it’s affected me. But I was really focussed on everything being endo related when in fact I had more going on, then I found out I was actually born with some issues, so not endo related at all.
The fact you’ve had rectal bleeding and thought not much of it shows you must be pretty tough. I hope both of you are as ok as can be. I really studied infertility and MC so anything I can help with don’t hesitate to ask.
I’d say the fact your ovaries are clear is fantastic when it comes to TTC. As I had endometriomas, which are blood filled cysts, I think that may have affected egg quality. With the PCOS too, that doesn’t really help. You could consider the progesterone pill whilst you’re waiting for surgery, just to stop your periods and hopefully halt your pain.