hi there

[fudgecakes]

Hello all, I am just looking for some advice please. I am 35 years old and I have had some discomfort passing stools for about 6 months. It is not the actual passing but the lead up to passing the stool. For the last 2 months just before and while I am on my period the pain has been unbearable. It makes me double over onto the floor and it comes in spasms almost like contractions during labor and I did consider going to the hospital last night as it was so painful but I knew it would eventually pass. Once I have actually been to the toilet the pain subsides although I am left with a kind of burning sensation just above my pubic line. It also hurts to walk as every time I put either foot down I get a shooting pain just above my pubic line. Everything I have described only happens during my period though. I get a slight discomfort otherwise. My friend said it could be endometriosis. I have never heard of this. Obviously I know I have to go to the doctor as my boss had to take me home from work last night and it was super embarrassing being doubled over in front of my work colleges saying I was having a bad period. I know you guys are not medically trained but does this sound like symptoms of this condition?

[fudgecakes]

It sounds weird but it also hurts to sit down squarely. Like I have to sit on my bum cheeks rather then actually bear weight on my rectum. I also noticed a jelly bloody like substance from my back passage yesterday. Anyway, sorry for the graphics.

[Ems3_1972 in reply to fudgecakes]

Hi

Just read this from you too... Yes, I had those symptoms too, endo can stick to things inside pelvic area than can make sitting a certain way uncomfortable...

But 3 kids later and at 42 my endo seems to be under control after various treatments, so try not to worry... Start with a visit to your GPxx

[jenmarshmann in reply to fudgecakes]

Sweetie the bloody jellybeans probably just mucus. It's not very abnormal if you had a big stool or had to bear down to tear a little. If your bleeding every time you poop then go see a gi doc.

[Ems3_1972]

Hi

Yes, does sound like endo. I used to get horrendous pain during period when I had a 'gassy' tummy and when I was passing a stool. Used to feel like a knife was passing through me. Endo can attach to the bowel, bladder, ovaries, womb making periods unbearable. Pay a visit to your GP. I was diagnosed by having a laperoscopy and I think this is the only true way to know if it's endo for sure. It's very common, so you're not suffering alone, it can feel horrendous but there are treatments you can try if diagnosed with it. Good luck xx

[jenmarshmann in reply to Ems3_1972]

The only surgery to get rid of endo is robotic laproscopy. It has to be burned out or it will come back!

[fudgecakes]

Hi thanks for that advice. I had a lap when I was 15 for PID and I had to stay in hospital for a week afterwards as they punctured a hole in my womb, so I am not sure I want to go through that again. Is there any other way they can diagnose?

[Ems3_1972 in reply to fudgecakes]

I think I was told that a lap is the only real way you can make a definitive diagnosis, having said that, when I had a ' trans-vaginal' scan to check an ovarian cyst, I'm sure the consultant said she could see spots of endo here and there so you'd need to check. That's terrible re your lap experience, that would put you off for sure but unlikely to happen again... I've had 5+ laps, all been ok...you are suffering so badly and there are options available to you. Do you have children if you don't mind me asking?

[fudgecakes]

yes, my daughter is 18 next week My periods have become heavier and longer and it hurts to use a tampon and almost feels like there is not enough room to insert it properly. I guess I am worrying needlessly at this stage but the pain is out of this world. Thanks for the comfort. xx

[jenmarshmann in reply to fudgecakes]

Sweetie that feeling your getting is because your pelvic muscles are tight because your worried about endo. Next time you put a tampon in spread your legs like at the gyn. Relax like they tell you and it will go right in.

[Ems3_1972]

That's lovely re your daughter!

If you do decide to go ahead with investigations, and does turn out to be endo there are lots of options to help,don't suffer with that kind of pain, I know how horrendous it is!

I was recommended the Mirena coil and has virtually stopped all pain, periods are almost non existant and I can live normally again x

[fudgecakes]

I'm so glad you are not suffering now, thats great news I do actually already have the coil though x

[leahsg]

Definitely sounds like endometriosis. I have recently been diagnosed myself with endometriosis spread to my bowel also and my symptoms were exactly the same as yours would definitely go the doctors asap as it sounds like it may be on your bowel also! X

[Tracey29]

Hi there. Your description of symptoms sounds very similar to mine. I have horrendous cramps and pain in my bowel before and during a period ( which have got heavier and more painful since my kids now young adults) it feels like a red hot poker is going up me and tampons are now impossible. I have 2 laps in last 3 months and have stage 4 endo everywhere including a significant nodule on bowel sticking to uterus. I am booked for total hysterectomy and bowel resection in March and can't wait to feel well and pain free again. Please get some medical advice I don't think it will go away alone x

[jenmarshmann in reply to Tracey29]

I had the same symptoms as endo but had adenoma in my uteris. It is like a fibroid in your uterus. The cancer doctors had me scared nut it wasn't endo or cancer.

[Charliechocolate]

Oh dear - yes I have had this word for word. Agony total agony just before I go to the loo too!

I had a lap stage 4 everywhere. But I am mangling without surgery. I have been out on a special hormone treatment and I am following an endo diet and I have tried to take as much stress as I can out of my life, I feel a million times better ?

Goodluck and go for a lap ASAP it really is best to know exactly what you are dealing with before you decide what course of treatment to have.

Love

Charlie x

[Breathe]

Try taking L-glutamine powder. Get the vegetarian version, by Solgar or Lamberts brand. I Take 1/2 to 1teaspoon daily on an empty stomach ( before I go to bed) This helps heal the intestines/gut. Which will help your bowels digestion, aids vitamin absorption & improves muscle tone/quality. It's an amino acid - a protein building block.

I used to have the exact same excruciating pains - since taking the above - it's made a huge, huge difference. X google it.

[Elwood]

Yup sounds all too familiar, I have 20 years of bowel disruption fun!!! Head to the GP with all your symptoms written down and don't take no for an answer. There is also a possibility that you have adhesions from your last surgery which could be causing trouble too.

Good luck xxx

[jollywagtails]

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.

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!

[CubaTrekker in reply to jollywagtails]

Wow what a lot of info. I've read your post twice now JW and I have to say that despite what you have had to endure you are obviously doing your best to remain positive.

I too have been told that it might be time to consider having a hysterectomy. Although it worries me that it might not help as I have the endo on the bowel and they can't take that away!

The one thing I can be grateful for is the fact that 4 of my 5 laparoscopies have been funded by the NHS. So it has cost me emotionally but not financially.

That said I think I will invest in some more acupuncture. I found it did help and went for several years. I have also found reflexology useful.

Swimming is good too but I find it difficult to fit in. So tired after work. It is the fatigue that gets me and I am extremely irritated by being told that I should try to relax more. Living in this body can be depressing but I do my best to keep smiling ☺

[fudgecakes]

Thank for all your words of comfort and advice ladies. I went to the doctors today and he has put it down to stress.. I am unsure with that diagnosis but he has given me some buscupan to help with the pain so I shall give it a go and hopefully it will work. If it doesn't I shall be back in touch. Thanks again and I hope you all find some peace of heart and mind. xx