Endometriosis support

I finally got diagnosed with endometriosis, fibroids & ovarian cysts back in nov, finally got put on the surgical list, op should of been in march only to be moved to April, the endometriosis has taken over my life, I'm off a week at a time every month, if anything the constipation is sometimes worst than the actual period pain, every month it's getting worst, & it brings me down so much that something like this takes over my life, does anybody recommend any support groups or councilling as im having good days & bad days of dealing with this, the main reason for getting the tests done was my partner & I have been trying for a baby for just over two years now, I will be having a second op in the summer once this one is done as I also have a bicentinal uterus aswell, any suggestions to help would be much appreciated.

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  • Hi

    You poor thing, not sure of support groups but sure there will be someone on here who knows. Just wanted to say even though you are feeling horrendous now, keep strong and don't give up. I had a similar diagnosis to you except for the bicentinal uterus. I now have 3 children after being told I'd probably be childless and conceived my 3rd at 39 years old complete with ovarian cyst and recurrence of endo...if it can happen for me it can happen for anyone. There is light at the end of the tunnel...good luck

  • Sweetie go to your gun and put your foot down you need surgery now! Or go to a gun oncologist and have him check you it will give you peace of mind until April.

  • I know the pain you feel. Mine has been diagnosed as endometriosis. I mostly get it with my periods but it has had a mind of its own sometimes popping up at other times and sometimes I get a pain free period. It started as mild and got worse through years. Get on to it quickly if it is endometriosis, before it becomes a huge burden on your life!

    My period comes with frequent loose stools then after a couple of days I am constipated. The pain varies from feeling like I've been stabbed up my rectum with a knife to feeling bruised like someone kicked me there. It can last for days and sometimes into weeks on end. It is constant and wears me down - from a vibrant productive woman to someone who walks around slowly and miserably, like an old decrepit lady. It has forced me to work only casually, since I can no longer be reliable as a full time worker. I have two teaching degrees that I can no longer use to my full capacity. I get no help from Government, since endometriosis is not listed as a disability. (The policy must have been written by men.) On the upside - I started a home business which is doing quite well. There is always an upside!

    So here is my long post and first post, after five long years of experiencing excruciating pain caused apparently by endometriosis on my bowel wall.

    Find an understanding gynecologist. I am now on my third now after finding they didn't really get the excruciating pain I went through - advising Naprogesic and Ponstan and Panadeine forte for bad pain - none of which worked at all. It has been difficult finding someone who understands this disease.

    My partner took me to Emergency twice because I was almost passing out from the pain. I had a colonoscopy that came back clear and removal of fibroids three times in ten years. The 3rd op was because I was told I had cysts on my ovaries which ended up just being more fibroids. Do they really know what they are looking at?? I would never had had that surgery if I'd known, $6000 of our money down the drain later. Don't let me start on how much this disease has cost us!

    I was told when I presented at Emergency it was most likely Proctalgia fugax, even though the pain was constant rather than fleeting. They put me on a morphine drip, which brought the pain down but didn't end it. Eventually after about two years, I was finally diagnosed with endometriosis on the lower bowel wall. One Gyno who was pretty old, actually told me he hadn't experienced this before. I have since found out it is not uncommon at all, from reading forums and finding an understanding Gyno.

    I had one GP ask me if it was worse when I was feeling down, implying it might be psychological. I had to explain that I only feel down after having this pain for days on end. When I don't have the pain, I am such a happy grateful person who enjoys life, pain free!

    It has been a hard road, with little real understanding from doctors. After five years now I've learned to manage the pain to a sufficient level, enough to keep me from Emergency. I have recently been pain free for 10 months, but it returned last month. I got slack with some of my routines which I believed must have helped.

    One of these was acupuncture once a week. I did it for two weeks, then couldn't really afford it so went to once a month, then stopped completely after 5 or 6 months pain free. I probably should have kept it up and will now return at least monthly.

    After consulting with a pain specialist, I take 2 ibuprofen and 2 paracetamol every four hours which seems mostly sufficient. If pain is particularly bad I take Oxycontin. I try to avoid this because it exacerbates the constipation. I will not take codeine because of the same reason.

    I have a Valium at night to help me sleep (only when pain is bad. Valium is addictive and I do not want another problem!)

    I practice yoga for twenty minutes each morning in front of the TV, when my pain is low only. My absolute favourite is an oldie - Power Yoga by Susan Fulton. It is supposed to stimulate the inside organs of the body, as well as toning the outside. She is a very nice normal looking woman with a lovely soft English voice and there is meditative music in the background. The exercises are gentle and progressive. I really feel these exercises have really helped me on both a physical and mental level. I definitely feel stronger.

    I try to walk and swim as well at least 3-4 times a week. Gentle exercise is the key I feel. I drink as much fresh water and herbal tea as I can and eat mostly only fresh foods. No packet stuff! I do slip occasionally. Learning to cook great food has been another upside. So many food ideas on the Internet now. Every morning I try to eat porridge with a couple of prunes (and a bit of brown sugar) and drink a glass of water with fresh lemon, followed by another glass of fresh water so the lemon does not wear the enamel on the teeth. I'm not always perfect, but I do this as many mornings in the week as I can. I do not consume soy anymore as it is high in estrogen.

    My secret weapon when the pain is really bad and I'm also feeling constipated is a travel enema kit that cost about $30 and works better than any of the laxative products on the market. Believe me, I tried them all from Movicol, to natural ones to Coloxyl Senna. I find the enema kit is gentler on the system and feels so much better. Since my pain is only in the lower rectum area, sometimes traveling through to my vagina and upper legs, I do not want to also mess with digestive system, which I find laxative products do. I've also tried a coffee enema, using real brewed coffee. The garlic is gentler though and I prefer it. There are loads of Enema recipes on the internet using naturally grown products.

    IMPORTANT NOTES ABOUT USING ENEMAS AT HOME: I boil filtered water in a stainless saucepan for five minutes or so. I add peeled garlic cloves which has antibacterial and anti-inflammatory properties. I let it cool right down. I strain it into the well cleaned with hot soapy water - enema kit. I use paw paw ointment to lubricate the enema end and my rectal area to prevent perforating the bowel and very carefully insert it whilst on all fours on the bathroom floor. Hold as much water as you can for as long as you can, then gently release in all in the toilet bowel. If you are like me, some hard little poos will come out and then everything starts working well again. It should be a gentle process. Do all this as gently and carefully as you can. I find this really helps the pain and offers so much relief. I sometimes do this twice a day when the pain is particularly bad. After that I stick a hot water bottle, down the back of my pants and try and get on with life.

    I find the pain only lasts four to five days instead of two weeks, and has kept me from Emergency and taking the hard drugs - when I do these things. Like I said I was pain free for 10 months when I did everything regularly.

    As you can see I prefer the natural route. I don't like the idea of contraceptive coils stuck up me or another operation to resection bowel etc. I truly believe I've already had two unnecessary ops which have since caused more problems - scar tissue, pain when coughing and sneezing, weakness in the abdomen area and possibly the endometriosis itself. All the options given have risks and I'm not keen on playing russian roulette with my body any more. Get a 2nd, 3rd opinion if necessary. Do as much research as you can.

    I may go down the route of a hysterectomy soon since I am getting too old to have children now anyway. I am 44 and didn't do this before because I was hoping to conceive, but alas never did. I have been told a hysterectomy may or may not help. I am interested in hearing from those who have been down this road.

    Well good luck! I hope my tips help, but find what suits you. It is a pain like no other I've known and I have felt very alone with it in the early years. Support amongst us women is vital in these trying times!

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