looking for a bit of advice. Was diagnosed with severe endo in March, part of the bowel, uterus and something else is stuck together. They also said one of my fallopian tubes doesn't work and is infected, and i have this large nodule in my vagina which causes daily discharge.
They have said to fix it all i would need to have an operation, but it is very high risk and could end up needing a bowel resection if they penetrate it or have a fistula form. I have been feeling very low due to this decision i need to make because i don't know what to do for the best, and nobody i know has what i have got or been through it, or even had an operation.
Just looking for anyone who can give me any advice or help, it would be very much appreciated.
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If it’s a difficult operation it’s surely your right to have the required qualified doctors perform your operation instead of just pointing out the risks. Seems to me like you need more information to help you make a decision. Have they said what happens if you don’t have the operation? Most people with endo have things stuck together and have a successful op. I hope they aren’t just trying to put you off instead of explaining how they can help. x
Thank you for responding to my post.It is just very difficult to make a decision, my gynae has said his opinion would be to have the op and get it sorted but understands that it isn't an easy choice.
I have been told that because i have an infected fallopian tube it could end up going septic, and this nodule thats in my vagina could possibly one day penetrate into my bowel i think they said, causing bowel obstruction so of course i don't want that to happen but it's very scary to think i could go ahead with the op and wake up having found out i have had to have a bowel resection and a stoma bag, i have really bad anxiety and just feel unstable to make this choice.
That sounds like my story. I had to have the bowel resection as mine was damaged and twisted by 26yrs. Mine became serious. 1 of my ovaries disconnected and the other tube blocked.I feel that if it's not serious enough for you at the moment go on a drug like Zoladex to calm everything down for a Yr or more and see how you cope.
If your trying to get pregnant then have the operation by a Endo Surgeon, get it sorted. Unfortunately Endo does tend to come back. After a operation like this one they advised me that this would be the best time to try and conceive before the scar tissue gets more adhesions.
With Endo it's a case of working with and around the disease. The drugs are good. This website will be very helpful.
Thank you for your response.My gynae mentioned some drug options to have in the meantime and i told him i didn't want to start messing around with my body really, im only 35 and when he mentioned about early menopause i was like no way.
The operation i have been advised to have it, for me the 2 biggest issues and things that i think need to be removed is the nodule in the vagina, which is causing this discharge every day and really gets me down, and this tube that is infected because they have said that it could go septic.
I have such bad anxiety that i just focus on the risks that they have set out and find it so difficult to make a decision. The thought of going ahead with everything and then waking up to find out i have a fistula or have had to have a bowel resection and a stoma bag would be devastating and i just don't feel properly equipped to make that choice.
Hi,I believe you should get a second opinion from a Endometriosis Surgeon. There are s few in the Country. Mine a woman in West London.
Fistula in the bowel can be common if like me you have adhesions in the Pouch of Douglas which is between the Rectum and Vagina.
There isn't a reason to say you will have early menopause by taking Zoladex. Zoladex is a drug which switches off the Pituitary Gland in your head so whether you have Endometriosis, other illness or rest bite before IVF, including Breast Cancer or as a man Prostate Cancer switches off hormones. Within 2 mths of coming off the drug periods usually return at your age.
The type of Operation you are thinking of having will require a type of incision across at the bikini Line. The recovery isn't quick 4 to 6mths. It took me a full year before I could drive several hrs or lift things of weight. You have to ask yourself can you manage without a operation???
Having this operation will fix some of the physical issues but the Endometriosis usually does start to grow again and symptoms return with 6mth to 2yrs unfortunately.
Painkillers, TENS Machine, Anti Spasmatics things like Fennel Tea or Belladonna from Holland & Barrett.
Taking Painkillers 1hr before sex. Love yourself, get relaxation and top up on Sleep and Vits expecially C, D3 and perhaps others.
It was frightening myself but being in control of Endometriosis yourself. Learning excepting and work rund it are the key to smiling, being on top!
I am here for you. Calm down, work with yourself to stay on top.
Thank you again for your responseI am just struggling so much at the minute, i feel that at 35 i am still young and have never had to deal with anything as hard and stressful as this before in terms of having all these things wrong with you and maybe having to face a big operation.
I have just been signed off work for some weeks because he thinks i have depression, which isn't surprising with my current situation.
My pouch of douglas is decimated, my gynae told me, there is no gap at all anymore between the things that should be because they are all stuck together.
I don't really want the operation because i would be devastated to have a fistula or the bowel thing, but my only concern is this nodule and the infected tube, i feel like i should get these out incase they cause worse things to happen.
What do you think you would do in them circumstances?
Hi, I know this is difficult for you. I feel for shock with dealing with your thoughts.
I remember mine, my denial. Why me?
Once you can get your head around this you will get on top of it.
The nodule? in your vagina will have to be removed as these things can change at somepoint.
Cysts on Ovaries are monitored by type/size once they get to 4 to 5 cm again they want them removed by keyhole Surgery. The recovery time is usually short.
I know you don't want to take drugs but it's a way of maintenance of the Endo getting worse.
The Pouch of Douglas is often a place that gets like this if there are adhesions in the bowel. By taking the maintenance drug as the lump can be reduced or at least cut down the inflammation.
the bowel isn't difficult to empty, I can go to the toilet up to 3 times a day!!I was told I had IBS some years ago when I first started with all of this and I take mebeverine for this.
I don't really suffer with pain every day, and I can go weeks, maybe months without even having any pain, its's just when I have a flare up it's really bad and I find buscopan helps a little.
That's also why I am so unsure on what to do because I don't suffer every day, it's just the nodule and the tube that has thrown the spanner in the works! and the gynae has told me that he's fairly certain that its this nodule that is causing the discharge, and for me that's one of the worst things that I would love to be rid of to feel normal again.
Having a ovary tube issue isn't a issue then at the moment. You still could get pregnant with 1 tube. I would only have that done if you can't get pregnant or you develop large cysts. Buscopan has Belladonna in it. I tried buscopan but the Belladonna on its own works better for me. What do you think causes these flare ups? Chilli, onions, garlic, mushrooms, banana, Pasta, celery, coffee, Lager or is it only pre period. When the bowel goes slow er. Fennel Tea is good for spasms.I would think your nodule like when I had my Vagina biopsy. I was put to sleep, the vagina dilated of the problem removed. I would think the recovery wouldn't be that long.
I have nothing that sets the pain off, like I said I can go for months without having any pain, it just flares up at random times and I don't know why and with my periods I really only get pain the first 2 days and I take painkillers for period pain and then its ok.The fallopian tube is troubling though because its infected and can go septic.
I just don't want to leave things that could go worse, but then I don't know if I can go through with it, and don't know if I could cope with being out of action for 6 months!
Antibiotics, high Vit C, Vit D3. Anti inflammatory foods. See foodMAP online. Keep your immune system at its best!Wow your so lucky not to live with extreme pain, lack of sleep, personal life cancelled. When I was 32ish my lungs would bleed each month when I had my 10 day flooding period and several times over 6 yrs I spent in hospital.
I can't have any further operations unless they are life treating as I will lose my bowel and many be my bladder. After my 6 operations, scar tissue and adhesions everything is matted together, bedded down and difficult to separate. There are any drugs now I can take due to intolerance, damage to organs , so just pain killers now and morphine.
Really you have to put your problems into context with what could be. You have done well to get to 35 and only starting with a few symptoms. Illness comes at any age as death does. It's always someone else but sometimes it's you! As I once couldn't believe not me, why would I get ill?
Hi I’ve posted several times about my story I too had a bowel resection they told me if I had left it much longer it would have been fatal for me as my bowel was twisted and was starting to form an obstruction. I am now basically pain free. Please feel free to search my posts as I’ve been very open with my journey any questions pls ask xxx
Hi thank you for your response.I am currently signed off work with stress/ depression, I have bad anxiety too.
In march I was told that I have severe endo, my pouch of douglas is obliterated, I have an infected fallopian tube, my rectum, uterus and something else is stuck together with part of my bowel, and I have a nodule in my vagina, which causes me to have discharge every day and I hate it.
My gynae has said to me about having an operation, and I have been in a bad way since.
I can't even think what is best to do because I'm so scared. He said it's very high risk and has explained that there is a chance they could puncture the bowel, I might have to end up having a bowel resection and if that happens I would end up having a stoma bag for some months, I could also end up with a fistula forming! The thought of either of these things happening would be devastating to me and I just don't know if it's worth the risk.
I don't have constant pain, I can go months without it, obviously it's just when it flares up its awful. The thing that causes me the most distress is the nodule that is causing the discharge because it's just not nice. I really am struggling so much with what to do, any advice or suggestions what you think would be great.
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