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

Yes, needingamiracle this endo forums generally really scary places. and this but you find those who post on forums are essentially making there life about their illness.

Endo isn't a death sentence and isn't even a diagnosis of infertility. I've had endo since I was 14 and been through some horrendous pain and problems relating to it, but I've been (almost) pain free for 10 years now and got pregnant the second month of trying when I came off the pill (although I did lose it, but trying again and feeling hopeful).

I have had bleeding from the bowel in the past too, but as I've mentioned before to you Kate, I didn't have to have any drastic surgery on my bowel and I really do find that controlling my stress levels helps to keep my endo at bay.

It's worth reading "Heal your Endometriosis, health and diet guide". It talks you through what foods to avoid to help reduce inflammation and gives you tips on reducing stress etc...
Any control you can gain over your situation will help you feel better mentally about your illness.

@needingamiracle and @KittyKat- thank you both so much for the support and encouragement.
I know I make people feel like they’re hitting they’re heads against a brick wall at the moment, as I’m being very downbeat and depressing about everything.
Obviously it’s very early days with everything and because all I want is a baby I’m angry and resentful at this diagnosis, purely because I’m having to put my baby making plans on hold to get myself sorted and I hate myself for that. I don’t look at my body the same anymore. Everything has changed!
I can only describe my pain as sharp nerve pain .... which is making me wonder if the endo has done something to the nerves or have I got something else I just don’t know?
I know I do have endo in a painful spot (pouch of Douglas) so I’m sure that’s a big contributor. But again- who knows for sure and I probably never will know for DEFINITE the EXACT cause of the pain xx

I had every pain in the book with my endo. Sharp, aching, stabbing, cramping, you name it. Never got to the bottom of which pain was caused by what precise adhesion or endo pocket or cyst, but I don't think it matters too much. What matters more is finding ways of coping with the pains (mentally and physically), which despite your "being very downbeat" you seem to be putting the feelers out to find the best way to go about this, so don't beat yourself up, you're on the right track.

It's more than frustrating that you're having to go through this at the time in your life when you're TTC, but just see it as an opportunity to prepare your body well for the future. Also, I know what you mean about not looking at your body the same anymore. I went through that, but I learned to love my body even more than I did before once I'd found my own coping mechanisms and got better mentally. I have scars and I hated them at first, but I just see them as old friends now. Having been through 3 surgeries and lots of treatments for endo and clawing my way out of the depression and anxiety, which came along for the ride, I now feel so much stronger as a person and as though I can handle anything. I am proud of myself for that, and it allows me to be able to tell you that you will get through is and things will get better. You're going to be fine.
Your body is not your enemy. You are your body. Learn to love it and look after it. You wouldn't be angry at a friend for being poorly, so don't get upset at yourself/your body for failing you. It's just an unfortunate circumstance, but you can learn to turn unfortunate circumstances around to your advantage.

And since pregnancy also changes your body and the way you view it, that might be an easier hurdle to cross once you get to it too because of what you're going through now. Just see this time as an opportunity to learn and grow as a person and to be more prepared for the future.

@KnitKitty- thank you so much. You’re too kind to me you really are....
I’m one of those that likes to “know” for example I wanted to know “why” I had the miscarriage but I understand there are some things they just cannot give an answer to.
I apparently have a 1cm nodule in the pouch of Douglas and I know this sounds stupid but I feel like I can feel it inside of me. Like a toothache sometimes lol. I can imagine that is causing A LOT of irritation.... I have so much to talk to the consultant about... xx

Had Endometriosis.

Horrendous time in my life.

I will say that I did everything, provera and everything, including all alterrnative stuff, acupuncture, homeopathy, healing etc. people who know shit about it always tell you it's a load of bullshit, like THEY know

My son is going on 27 now.

@Iflyaway- thank you!! Great to hear you conceived with the condition. I’m doing really well staying away from the petrifying endo forums!!!! I love the ladies on here xx

Kate thanks for your lovely response.

Not sure if I conceived with Endo. Was 21 when it was diagnosed. 36 when I gave birth.

All I know I did everything to find out what it was and how to get rid. Was awful. But healing helped. Sadly, most people don't understand spiritual healing can be helpful.

They treat it like "woo". Especially on MN

Robert Schwartz. Your Soul's Plan is especially helpful. Just google it.

Wishing you all luck in the future!

@Iflyaway I’m all for alternative therapies so I shall definitely look that up- thank you!
I’m trying to eat healthy at the moment but as I’m feeling a bit yucky I’m craving comfort foods.
I’m drinking turmeric and raspberry leaf tea, no idea if it does any good but as a bonus I like the taste 😊.
Thank you for your support and sharing your story with me 😘 x

Kate, so sorry you are going through this. It is SO hard and awful.

There's an endometrioris society in UK - at least it was in the 80s. Just google everything and anything you can find out about it.

Oh and by the way, demand - I know that is HARD! - that your GP takes it seriously most are crap, sad but true

I completely agree with you! I was fobbed with IBS for years, obviously it was the endometriosis near my bowel.
I’m not very assertive so I make my husband come with me to appointments now for additional support x

Looking forward to hearing some more positive stories- 😍- keep them coming!!! X

@Iflyaway- Hey, was just thinking about something you said yesterday. You said you didn’t conceive with endo. Did you manage to get rid of it virtually before TTC? If so, what did you find the most useful way? X

Diagnosed at 22, told highly unlikely we would conceive naturally. 12 years of treatment including six surgeries but never tried.

Decided to try at 34. Conceived literally the first attempt, with twins. Endo and fertility is so complex.

@TammySwansonTwo- that’s amazing!!!!!!! Couldn’t ask for a more positive story! May I ask where abouts your endo was located?
Tell me about it.....I got pregnant very quickly off pill but lost Buble. Now trying to sort the endo out before trying again.. I’ve had one surgery I’m sure I can get through another 🤞🏻 xx

Meant to be bubs not Buble 😏

😍 would like to keep this thread going to keep momentum up! Thanks ladies for all your support and encouraging stories so far x

All over the shop - last surgery I had it was mainly affecting POD, nodules on uterine ligaments, some deep infiltrating disease, one tube stuck to bowel, bowel stuck all over the place. Was very shocked that it didn’t cause any issues carrying - had some issues but unrelated. Wishing you all the best

@TammySwansonTwo- yes that’s where mine is. All around the bowel and pouch of Douglas 😢. I’m assuming the surgery went ok? I’m feeling very nervous, I was about the diagnostic lap so this one even more so!!!! I just have to keep reminding myself
of the ultimate goal and that is to feel better and have a baby!!!! X

I’m an old hand at laparoscopies, I’ve had six now. They really aren’t that bad, don’t be nervous. Hopefully you’ll get a lot of relief from it. Do you know if you’re having excision surgery, is your consultant an end specialist? That’s the ideal really, often it’s just burnt away from the surface which isn’t always sufficient.

Try not to think the worst. Unfortunately miscarriages are common and it may not even have been related to the endo at all. It’s great that you know you can conceive and hopefully they can take steps to support your next pregnancy x

@TammySwansonTwo- bless you, thanks. It’s just been a rollercoaster year, was not expecting to be facing a second surgery but hey ho! People have surgery for a lot worse.
Oh yes- I have done my research!!! I’m seeing Alfred Cutner in London ( you may have heard of him?) he does excision. I know it’s the best way to go...
To be honest I found my first lap a breeze, I know the second one is more complex but at least they’ll be prepared I suppose? X

Phew, that’s great you’re seeing someone who knows their stuff.

The recovery is likely to be a bit tougher than the diagnostic since they’re doing a lot of work in there and there’ll be bleeding and bruising inside... but it’s really not unmanageable. Just be sure to keep taking Pain relief regularly, don’t wait until it’s severe as then it’s harder to manage.

@TammySwansonTwo- I had quite a bit of work done on this lap. Was told I’d be under 30mins but was a good hour and a half so I have a small idea of what it’s like 😬.
I just hope it’s the last one i have for a LONG LONG time x

I hope so too. I had quite a few close together until I found a specialist, then a five year break, then a couple quite close together.

Now I need a hysterectomy but really don’t feel ready. Considering another lap to tide me over but not sure at the moment.

I know quite a lot of women who’ve had one or two and then not needed any more so fingers crossed for you.

You might find you’re under quite a bit longer - did the same specialist do your first one?

My old specialist used to rake 45-60 mins to thoroughly visually inspect everywhere before beginning treatment, think my longest was about four hours. I do find the longer you’re under, it does add a bit of time to get over the anaesthetic but beyond that doesn’t make too much difference.