I need support please

[Endo1987]

Hi. I am new here. I was recently told that I have recto vaginal endo that is deeply infiltrated in my bowel and I will need surgery and that all my organs are stuck together. Since then I have been so confused and no matter how much research I’ve done, I can’t seem to find the answers I’m looking for. I am terrified for my life and my well being. The doctors words keep replaying in my head when he said I have a lot inside me and it’s rare and hard to treat. I keep thinking I have no hope. I am depressed and feel like my life has ended. I just need someone to talk to that has been in a similar situation to help me understand what this means for my life.

[Mf1209]

Hello,

I am so sorry to hear. It can be really scary. Are you able to get a hold of your doctor or the nurse to speak with them further? My organs were all adhered together during my first surgery (2018). It is really scary to hear them say that so i completely understand. Ive learned that unless you ask specific questions they won’t bother going into details. I am not a doctor or nurse but through the laparoscopy they should be able to to help. I recommend scheduling if you haven’t. For the best peace of mind try getting ahold of someone at the doctors office. You aren’t alone in this. My emotions sky rocket everyday from worried to hopeless to i’lll be fine etc. I have found this website very helpful as you can find a thread for almost every situation. I have seen a few about organs being adhered together, so maybe you will find some more helpful info there. Google search isn’t always the most helpful in terms of info.

I hope you are okay!

[Endo1987 in reply to Mf1209]

Thank you so much for responding. I made an appointment with the doctor and she said she is not the right person to speak to as she doesn’t know anything about it and that I need to speak with the gynaecologist but thats been hard to do do as I have to contact the hospital and reaching the doctor isn’t the same as reaching my local GP. I will use this website more and hopefully I’ll feel less scared and alone in this. Thank you again.

[SK2021]

Hey I’m sorry to hear this: I also have severe stage 4 rectovaginal endometriosis. Please reach out if you need any advice or someone to talk to. I feel exactly the same as you do ☹️ X

[Endo1987 in reply to SK2021]

Thank you so much, that means a lot to me. I’ll send you a DM

[M1673402]

I am in exactly the same situation as you! Can I ask how you found this out? Mine was discovered during a laparoscopy just a few weeks ago and I’m in the same boat of facing future surgery and feeling very upset and anxious. If I can help at all please feel free to message me. It is really, really difficult and very hard to find answers! This site is invaluable, my advice would be to take one day at a time, as cliche as that sounds, you need to get your head round what you’ve been told first and foremost and start jotting down any of your questions

[Endo1987 in reply to M1673402]

Thank you! I appreciate that. I’ve had pain since I gave birth to my child 14 years ago. Years went by with the doctors ignoring my pain for normal period pains. One day I was watching an American show on tv about a celebrity who experienced pain and I realised it sounds so much like what I go through and that was the first time I heard of endometriosis. I even went to the doctor and I mentioned that I think it may be endometriosis but I was brushed off again. Eventually in 2019 my pain suddenly disappeared so I was for the first time able to hold a job but in 2021 the pain came back and I was so afraid of losing my job over it so I pushed the doctors to do a scan or anything to check what is going on inside me and finally it was confirmed that I had endometriosis but only recently towards the end of 2021 I found out how bad it was. I’m so glad I found this website because I have felt extremely alone in this. I will definitely send you a DM. It’s getting late so hopefully we can have a chat tomorrow.

[M1673402 in reply to Endo1987]

No problem at all. Get some rest and take it one day at a time! I hope you are ok and have been able to take some comfort from knowing you aren’t alone!

[Pirracas]

Hi! I’m on the same boat as you too. I got a diagnostic via laparoscopy last year and I also have severe endometriosis. Adhesions to my bowel and uterus. Waiting for a second surgery to remove them. I find this page really supportive and makes me feel I’m not alone in this. As they have said before it’s important not to get overwhelmed and take one day at a time. Feel free to reach out if you need to talk.

[Endo1987 in reply to Pirracas]

Thank you. Aside from the pain, are we able to live a normal life with this?

[MooMoolo22]

Hi, am in same boat, awaiting hysterectomy and they are having a bowel surgeon present just in case there are any problems. Can only reiterate what everyone has said, keep talking and asking questions, chat on here too, couldn’t find much info and my consultant recommended this forum and just the understanding from everyone is comforting. Have days when I feel like the end stages of my pregnancy (18 years ago!!) sometimes with pain and bloating. For so long I put it down to just getting older and as I was so used to it I didn’t realise how bad it was. When I mentioned to someone that I would waddle about rather than just walk or not sleep due to pain in my back/tummy/bowel it dawned on me to go get checked out! Seems completely ridiculous now I write that but there you go. One day at a time, don’t suffer in silence and try to stay positive which is difficult under the circumstances. My first week after laparoscopy was brutal! Mind racing and the stress of it all, but you’ll get there. Take care of yourself. (I have changed my diet to help with the bowel/toilet side which is better). Sending lots of love.

[Endo1987 in reply to MooMoolo22]

Thank you. I know exactly what you mean. I always describe the pain as labour pains. Imagine going through labour all the time! There’s no end. I am still waiting for an appointment fora follow up but no sign of this appointment.

[Greys90]

Morning endo1987, sorry to hear your recent diagnosis. I have deep infiltrating rectovaginal endometriosis stage 4. The first news of it is scary and sometimes reading up on it makes you feel worse as it’s all new and the fear of the unknown. Please try not to panic. I imagine you will be seeing the consultant again for a follow up appointment to make plans and may feel reassured after discussing in more detail.

It is a lot of information to take in so I always take notes in my phone of questions to ask when I have consultations and then also take down notes of what they have said so that I can digest it properly when I’m back home.

Did they mention any specific surgeries that you may need?

I started with symptoms age 13 and was diagnosed aged 21, I’m now 31 and have had numerous surgeries. I’m here for any advice or just to chat as someone who’s experienced/experiencing it.

[Sara110]

Morning, i hope you are well Coping up with endometriosis. I recently have a surgery for stage4 endometriosis plus frozen pelvic. All organs were attached to each other and endometriosis tissue was on the top.

It went successfully good. I was told to stay on pill until 3 months. I still have some pains lower back. But i will pray for your health

It is frustrating no doubt but we have to figtour depression

[Endo1987 in reply to Sara110]

Thank you! It’s really reassuring to hear that it went well for you. I think this is what I need to hear.

[aannaa]

With you on this. Just chiming in here to say that I’m also stage 4 with rectal/ vaginal involvement (I’m 30). I had lap surgery a few months ago in November 2021 & can completely relate to your feelings. It’s a huge slam dunk of a diagnosis & I too felt like I was at a loss for information & left trying to grapple with the details of what this actually meant for me. My GP & local hospital (gynea) team were actually (unfortunately) a massive obstacle to me getting diagnosed as everything “appeared normal” when it definitely wasn’t - it wasn’t until I demanded a referral to a specialist NHS endo centre/ department BSGE (not anywhere near where I lived) that I was able to find the right support, get a clearer idea of what I was up against & what help I had available to me. Surgery was key for me & the whole process has been emotionally & physically hard. Keep talking, asking questions, I ended up asking if I could record the conversation on my iPhone so I could listen back to it/ relay with partner. You’re in no way alone with this horrific condition & you’re in the right place here to find a sense of support with so many others who also know how you feel. As above, here to message more at any time. Anna. X

[Endo1987 in reply to aannaa]

Thank you so much. I am having a hard time getting more info from the doctors. They’ve told me the bad news and now I’m just left wondering and waiting.

[MelissaHewitt87]

Hi Endo1987Sorry to read your message and trust me I know exactly how you feel may not be the same but I think it’s pretty similar…

I’ve got endo and currently got a 10 cm by 5 cm cyst attached to my bowel and uterus

I don’t know much about endo only recently been diagnosed most of my appointments have felt rushed, this is an amazing site for support but also found other forums where support is just as good.

I am too scared and can’t believe this has happened to me having just turned 35….

I’ve kinda pushed everything to back of my mind and I know it’s gonna come back round and bite me but I’m hoping to have laporoscopy

Sorry I couldn’t give you much advice just want you to know you’re not alone xxxx

[Endo1987 in reply to MelissaHewitt87]

Thank you so much. I appreciate that.

[MelissaHewitt87 in reply to Endo1987]

You’re welcome ☺️

[LRNHA]

Good morning Endo1987!

I am sorry to hear about your diagnosis, I know how scary and frustrating it is to not know what is happening inside your body.

The problem with endometriosis really is the lack of information. As much as a good doctor might want to help you understand your specific condition better, it's really an understudied disease, and most doctors themselves don't know as much about it as we would like. It's still a discover along the way kind of disease, either through symptoms, trial and error treatments or laparoscopies.

That's why having this support system on your day to day is so important, we really don't even know what tomorrow will be like for our endometriosis. I would advise you to keep in touch with good doctors as much as you can, schedule the necessary procedures and treatments they recommend, and come to us on a daily basis for support.

DM me if you want!

Sending you a big hug!😘

[JOSANDY40]

Hi there, Yes I have had all you describe.Yes I was frightened. Its alot to take on. But it is the way forward.

The only thing I would say is if your managing without a Operation at the moment do. Unfortunately you need over the years to follow only a few further keyhole Operations as you will create scar tissue and nerve damage in some areas as I have now. The monthly implant, drug Zoladex helped me for yrs continue working, to help shut down the Endometriosis.

I am bedded down with scar tissue. No more operations unless bowel blocks. Told could loss my bladder bowel.

I find Belladona good for spasms. Night time Fennel Tea. Not that tasty but it helps , both from Holland&Barrett. TENS machine on Back Pain Setting?? You may need to adjust to a different setting. Set the Electros on sides of body/pelvis. Set on low settings 1,2, probably, within 10 mins pain should be less, or adjust, then in 10mins further should be gone. Anti inflammatory pain killer when required. Hot water bottles on back and stomach.

I am sorry for you and all that have this disease.

My best wishes. x

❤

[Endo1987 in reply to JOSANDY40]

Thank you so much for all the information. It is really helpful! I honestly don’t want to go through surgery. But the doctor said that the bowel is narrowed where the endometriosis is so most likely they will have to do surgery and put me through early menopause, and nothing much was mentioned about my organs other than letting me know they are stuck together. I don’t know what that means for my health. I have so much fear over my future and my wellbeing. As bad as the pain is and as disabling it is, I don’t care as much for it as I care about complications. I’m worried that without surgery it may just continue to grow and take over other parts of my organs and make things far worse than if I do the surgery and then I also worry that if I have surgery I’ll be putting myself at so many risks too.

[JOSANDY40 in reply to Endo1987]

Hi, the problem with surgery is with Endometriosis it causes Adhesions, Scars, distortion of organs. When any Op is carried out bits of you, they part things to remove Endo, to move things. When this is done the tissue between things fulls away. It's the same as many piece of meat, seen on say a steak how some areas part easy because there's a seam thin connecting tissue. After a few operations this tissue is damaged, each operation will become harder to separate. This is called bedded down. Every Op causes more scar tissue. That's why you must just try to as few Ops as possible in the same area. Scar tissue and nerve can give pain after several Operations. Areas in the bowel that are prone to need more Operations tend to be on the left side or lower into the groin between the Bowel and Vagina called the Pouch of Douglas.

My bowel blocking at 26yrs, distortion, organs was very bad through my whole Trunk, I had full open surgery. Everything was moved, reshape. I lost a bit of bowel. I was fine for 12mths after but within 3 yrs and others only Keyhole Surgery. 6 Ops on if there is a next time in any areas of before I will require open Surgery again but this time I could lose organs or parts of due to they can't separate things.

A werid thing I found about my Endo is it attacks 1 area then is flairs up in another.

Good Luck. x

[Sham_R]

Hi, I am so sorry to hear that. I am in the same place as you are and was given exactly the same diagnosis and was also said that my endometriosis has reached to my left kidney. The pain is just getting worse everyday and I am so scared myself.

I really hope they get back to you give you more information so you can put your mind at ease.

[Endo1987 in reply to Sham_R]

It is terrifying. And I’m so sorry to hear it’s spread to your kidney. This disease spreading to our organs isn’t something small and that is why I get really confused as to how this isn’t taken more seriously.

[Ioanaap]

I can relate, a few months ago after my second laprascopy I was told my endo is also grown on my bladder and bowel. It's mild though which is not as scary but I was told I may need another more extensive surgery that can potentially damage those organs and that is scary. What do we choose, to live in terrible pain, or have other complications from a surgery? I feel your pain, you are not alone.I did a lot of research on it too for a while and there are various things that can help like anti-inflammatory diets, quitting smoking if you're smoking, or you can go down the spiritual side of things and try energy healing. I did reiki with a lady that used to have endo as well and hers went into full remission.

I know it's not much but there are other options. I'm sure you'll find something that works for you and your unique body.

Lots of love xxxx 💕

[Endo1987 in reply to Ioanaap]

Thank you. I am so afraid of the complications that I have accepted living with the pain. But I am worried that since I don’t know enough about it then how will I make the right decisions. The doctor said that I will need the surgery and may need to start early menopause so I wonder if I really have a choice. Am I doomed to have complications either way?

[R_elep]

Hi. I’m sorry to hear you’re going through all of this. I’m in the same boat - stage 4 affecting the uterus, bowel and rectovaginal septum. I’ve just started zoladex and having surgery in a couple of months with a gynae and bowel surgeon together.

My first advice is to just be gentle on yourself and accept that there will be days where you can barely do anything and other days where you’re feeling more positive. I congratulate myself for even doing small things on my bad days and that really helps give me even a bit of positivity.

I’ve bought a tens machine - yet to try it as this month has been fairly ok 🤞🏽 But I’ve read it’s meant to be pretty helpful. I find that my hip and back hurt quite a bit, (as my uterus ligament is involved) so I try to change my position (sitting, standing, lying down etc) to help.

There have been times where I’ve felt really low and depressed on this whole journey, especially when I was lying awake at night with pain. As silly as it sounds, I made a playlist of calming music and happy music to help! 🙈

And I’ve learnt that it’s all about taking one day at a time - if you start thinking about weeks and months ahead, it often feels so overwhelming so I’ve stopped doing that and found that really helps.

Sending lots of hugs!

[joey81]

Hi Endi1987 and all the other warrior ladies. Life is tough for us but maybe we are stronger than the average person. I just wanted to share something that helped me alot: drink chamomile tea daily and ginger tea. In my 2nd mri scan they saw that my endo had improved(this could have been due to me being pregnant albeit I lost my baby), however I found both these teas really helped. It's hard to change the diet for alot of people but adding in tea is hopefully easier. My prayers are with all of us everyday, May God provide relief, cure and make this test easy for all of us suffering xx

[Endo1987 in reply to joey81]

Thank you so much for sharing that. I will definitely add the teas your recommended. I’m so happy to hear that your endo improved. This makes me feel hopeful. Thank you