Recently Diagnosed...soul destroying

[Endom27]

Hi everyone, I recently got diagnosed with Endo this month after having a Laparoscopy, they said they cant remove it as its too dangerous, has anyone else been told this as well? My option is to go back on the pill to dull the symptoms or keep trying for a baby and deal with the pain. I just dont know how to feel and they said I may never have children which is literally soul destroying... i feel its been one thing after the other since having my lap, my belly button incision got infected after a week and then I got thrush 😢 and scared about going back to work as i work with babies...my mental health is just shot to pieces at the minute and I cant see any light at the end of the tunnel. Anyway I just thought Id post on here because I know you can all relate in some way or another. Also side note does any who has endo near their bladder have weakness, i cant hold my bladder for long and wet myself alot? Or is this a separate issue 🙄 sorry for the long post, i just dont have anyone that can relate and wont dismiss my feelings.

[Blueeve]

I had a lap too, mine was dangerous to the extent that they couldn't see much because I had severe adhesions too. I have been on zoladex for 3 months and I'm waiting to see if there's any progress. You are not alone, you can't loose hope

[Endom27 in reply to Blueeve]

I havent been put on anything yet and my follow up appointment isnt until January?! Xx I hope the zoladex works for you 🤞🤞 x

[Bethleah]

Hi were you seen at a bgse centre? I can’t have any more surgery as it’s too complex. I would seek a referral to a pelvic pain clinic as they may be able to help with the bladder. I’m under the John radcliffe bgse which has a pain clinic attached where they have people trained in Endo. I see a physio there who’s speciality is bladder issues. Try and get support for your mental health from friends and family. Refer them to endometriosis uk website for info on the condition so they u detest and it and can better support you. There are also many well-being apps out there for free that may be of interest. Let me know ( pm me)if you want any recommendations. Most of all know and accept you are not alone. There are many of us out there. There may be a local Endo support group that could help. It would be online now due to virus. Take some time to get your mental health back on track if possible before making any major decisions.xx

[Endom27 in reply to Bethleah]

Thank you for your detailed response, my gyno who referred me for endometriosis is part of the bgse. That a good idea i will get my partner to read up on it and hopefully he will understand me better 🤞 tbh my mental health was bad before finding out and then when i was told I just hit rock bottom, im going to go back to the doctor and ask for antidepressants as its just getting to much now 😔 xx

[Bethleah in reply to Endom27]

Good luck

[Blueeve in reply to Bethleah]

With the bladder issue, I read about it on Google and it talks about it as one of the complications that sometimes happen after laparoscopy so it is better to get it checked

[Endom27 in reply to Blueeve]

I have had the bladder problem for years, way before my lap x

[Noodle1984]

I’m so sorry you’re going through this. You will make it through. I was in a MVA almost 6 years ago which left me with a lot of medical illnesses (I’m up to 17 now). I am unable to conceive and it’s one of the hardest things I’ve had to come to terms with. You have to focus on what you can control. You can decide how you respond to a situation.

There are many different things you can do to try and ease some of the inflammation in your body. First eliminate wheat/gluten, dairy and sugar. These cause inflammation throughout the body. Reduce as much processed food and eat as organic as you can. This is something that will take time to help.

Find a contraceptive that works for your body. I know a lot of people complain about them but it’s the only way to keep your hormone levels in check. Endo feeds on estrogen so the more your allow your hormones to party the more it grows.

Find a physio who specializes in Endo. They are amazing and will help with all sorts of issues from incontinence, penetration pain, pelvic floor dysfunction, etc.

It’s not easy to keep going everyday knowing you’re just going to wake up feeling crappy (I also suffer major depressive disorder, panic disorder and GAD). But you can choose to make this life worth it. I have what I call my golden nuggets. They are experiences, people, things that I can think of when I’m in my darkest points and remember them. I focus a lot on art as therapy. Try and find a different outlet for your depression. I believe art can really be so therapeutic. Sending you lots of love. 💕

[Endom27 in reply to Noodle1984]

Thank you so much for your response! Such lovely words of encouragement 💖 I have tried many diets to try combat the pains but none of them seemed to work. I am now trying Keto which has helped a tiny bit, my legs dont get as swollen anymore so I guess its doing something. I ideally dont want to go back on the pill as I do want to try to have a baby naturally 🤞🤞I do alot of adult colouring to help keep my mind off everything x