Anyone treated endometriosis successfully?

Hi everyone

I started experience pelvic pain, abdominal pain, GI problem in April this year. After a whole lot of tests, scans, and colonoscopy, everything came back clear. Then my GP suggested I may have endometriosis. So I went to see an advanced laparoscopic surgeon who sepecialises in endometriosis. After I told him my symptoms he said I have (suspected) adenomyosis and endometriosis. His suggested treatment plan for me is laparoscopy to diagnose and excise the endometriosis (if any), hysteroscopy and insert mirena. I am not doubting his expertise, and I accept that my uterus is bulky and that I may have endometriosis in my pouch of douglas because I can feel the pain is from the left hand side of my rectum.

From the posts I read here it seems everyone is having a hard time trying to be taken seriously and have to push for a laparoscopy. My problem is opposite to everyone else's. Sure, I experienced pelvic pain most days since April and get bad back pain during period which I used to never have. But none of those pain are enough to stop me from doing my daily routine. I don't have to take any painkillers for them.

I don't want to take the risk of surgery, or have any hormonal drug which could potentially give me more grief (from side effects) than I currently have. So I told the gynecologist that I don't want to do anything about it for now. I am not sure if it's the right decision because I am not sure if any downside of not doing anything about it if the pain is manageable? For example, is it possible to have really bad endo that is damaging my organs and I don't know because I didn't go for a diagnostic laparoscopy?

Also, all I read is everyone is struggling with the side effects of the drug or had multiple surgeries. It seems surgery is just another temporary fix. Does anyone know anyone that has had 1 laparoscopy and they are pain free indefinitely?

[Marcia71]

Hi there. Sounds like you've found a good surgeon and quicker than most of us 😀 I'd ask him if he intends to actually excise the endo as if he is that's good as means it's cut out and shouldn't come back. Problem with endo is that their is no cure only treatment. If left it will continue to grow and could well fuse other organs together and pain will only get worse. Periods could well get heavier and more painful.

I've had two laps and still in pain as I'm not convinced surgeons properly understood endo which is why I'm now seeing BSGE surgeon. Are you in the UK? If so check yours is BSGE accredited.

Personally I'd try the excision as should reduce pain and hopefully halt (or at least minimise) further pain and problems. I can understand reluctance of having coil fitted so maybe wait on that to see how you go. A GP can always fit that later if you change your mind.

Good luck with any decisions.

[LinziLoo1]

I'm pretty much in exactly the same boat, I have had a lap however and defiently have endo particularly pouch of douglas etc. Surgeon removed what she could and now had had mirena for 3 years which stopped periods, never been totally pain free however and suspect I also have adenmyosis as well and pretty much permanent ibs type symptoms. I do however some how manage to carry on even when feeling unwell, tired in pain, uncomfortable and have a full time job, etc . I have had colonoscopy and other than finding a cyst found nothing wrong bowel wise.

I decided that for the time being I would just take care of myself and not let this horrible condition stop me from being me and live my life as best I can. Have the lap and get a diagnosis and go from there, you don't have to have the mirena immediately, I had mine later, baby steps. Its your body and you know what works for you.

[Hidden]

Hello from Nurse Gladys Emanuel (open all hours) about have a Lap.. as a retired gynae theatre nurse can I tell you a Lap is NOT just to look for endo. A surgeon will look all over your organs with the scope, the scope is attached to a monitor that has a Tv and the scope blows up the images 10 fold, they will look for fibroids an absolute pest to women that stick to the uterus like glue, they are pockets of fat & grizzle, when they are pulled away they feel like a cooked dumpling! Yes I,ve had a feel in order to pot the fibroids for laboratory investigations. They will also check your ovaries for cysts inside and out-yes cysts grow inside ovaries! they will even check your liver for gall stones, No stone is left unturned whilst they have the opportunity to look. To date the answer has been to insert a Mirena I.U.D. this supresses the ovaries and so no ovulation, no pains no flooding, yes you will have a bit of discomfort for a couple of days whilst your bowels and fallopian tubes settle back where they choose to be but that's a small price.. You can ask for an epidural anaesthetic if you are wary of a G.A. I hope I,ve managed to alleviate your fears, go get it done my friend and end some of your misery.

[Kfern]

Hiya I've successfully had endo removed following a laproscopy and I had the mirena for a while which did make my uterus less bulky !

Your story sounds familiar but I suddenly had pain and a degree of debilitating symptoms that helped me push for a diagnostic lap!

If your coping and not needing the surgery then do what's best for you I believe I've had endo for years leading to becoming really unwell some of it was old I discovered as this shows as white areas where scars have formed . I have however had two children and no fertility issues .

A mirena helped for 12mths but sadly after that the side efforts became too much awful ! I have since switched to a pill Qlaira which reduced bleeding considerably and I can live with it for now . I tried taking nothing but my adenomyosis was so painful I can't tolerate monthly cycles anymore without . The surgery was worthwhile I recovered well I know a hysterectomy is needed eventually I'm buying time as only 36 at the minute I'm hoping this would be my last and only other operation in a few years ! good luck

[Hidden]

Thank you for eveyone's reply. Kfern, I am 36 too and already had 2 children.

I don't mind not having any medical or surgical treatment as my pain is minimal at the moment. My main concern is if I don't do anything about it now there's a chance that the endometriosis may eventually invade my bowls, since the level of pain does not correlate the severity of the disease.

And it seems to me (from reading the posts here), surgical and medical treatments are not successful at treating the disease long term wise.

Maybe those who had it treated successfully are not here to post about it?

[Hidden in reply to Hidden]

Hi! I was in the same place as you two years ago. I was diagnosed with endometriomas (endo cysts on my ovaries) at 39. I declined any sort of intervention and my consultant agreed to monitor. I changed my diet, which seemed to help for a while. I am not in masses amounts of pain and I didn't want to risk feeling worse after surgery.

I met a new consultant this week, an endo specialist, and feeling worse afterwards were my concerns. But the endo has progressed and if I am honest, I am wishing I had agreed to a lap before now. He can get rid of it all. I do not think it's a temporary fix, especially if your specialist is good. He also said that you a) don't always realise the pain that you are in, you normalise it; and b) there can be a lot of endo and very little pain. I am hoping that I'll be a new woman after the procedure!!!

[Hidden in reply to Hidden]

Good luck Marie9. Do let me know how you go. I like to hear more success stories to give me more confidence in the treatment that is offered to me.

[DebsB33]

Hi I had laparoscopy 3 years ago and they lasered my endometriosis then,however for me I have not received any benefits to going through this procedure as I still suffer from same debilitating pain levels and for me it was only really useful to get a diagnosis after many years of suffering!hope all goes well with u x

[Hidden in reply to DebsB33]

That is so sad to hear Debs. Did you have it done with an endo specialist at a BSGE centre? It would be worth looking into excision, this is the gold standard of endo removal. With other methods the endo isn't completely removed and will not remove your pain in the long term. X

[DebsB33 in reply to Hidden]

Thanks for your response,I am not sure I got this done at my local NHS hospital and I have been told it was only a small patch however the fibres are attaching to my bowel and tugging on my bowel and this is why I am suffering so much pain!i also have IBS so have constant stomach pains and bowel issues!Do you just speak to your GP about this other type of endo removal?although I am currently trying to conceive so not sure if this would an option just now!x

[Hidden in reply to DebsB33]

Yes, ask your GP to refer you to a BSGE centre. Google their website and you can find your nearest one. Under NHS Choose and Book you can go anywhere. I received no help from my local hospital, they just wanted to do a hysterectomy because it was easier for them. I am now travelling 2 1/2 hours to see a specialist who will perform excision.

[DebsB33 in reply to Hidden]

Thanks so much for your response ,I will defo look into this further