Endo and Ulcerative Colitis

[Eliade]

Hi ladies, I have stage 4 of endometriosis and also ulcerative colitis. Do someone have ulcerative colitis or chron disease? If you do, what symptoms do you experience? In my case I have a cyst of 8 cm in my left ovary, an endo nodule of 2.5 cm in the rectum and my right ovary tied up to the uterus. I'm experiencing blood in the stools and I open my bowel up to 4 or 5 times a day with blood in the stools. I can't understand if I'm having an ulcerative colitis flare up or the blood is caused by the endo nodule Is anyone experiencing the same thing?

[Hidden]

Hi Eliade

I have UC and endo too, like yourself. Totally understand what you’re saying, not being able to distinguish between endo and uc symptoms. I got the same issue.

I got diagnosed with uc 3 years ago, got colonoscopy and was told I have ulcers in my rectum and it’s a mild form of the disease. They couldn’t explain my pain on my right side and bloating and frequent diarrhoea. They thought I had food allergies. It took another year and a lot of visits to the doctors (as well as my stubbornness) for them to realise it’s actually endo (and fibroids).

Are you on any medication with your endo? When was your last colonoscopy?

I think if you’re on uc meds and taking them properly then you shouldn’t be bleeding.

What is going to happen with your endo? Are you going to have an operation?

I also have 2 chocolate cysts, one on each ovary. I am managing my symptoms and want to avoid surgery.

Wishing you all the best!

[Eliade in reply to Hidden]

Hi Dive4life, thanks for replying me

You can understand me though... I'm sorry you took a year to find out that you had endometriosis, your stubbornness has won, you did right to insist because doctors don't take our symptoms seriously!

At the moment I'm taking Visanne for endo, it's 2 mg of dienogest (progesterone) per day, I started it 10 days ago and it's giving me enough side effects. I started this treatment because it was given to me by my private gyne who is in Italy as doctors here left me completely alone and I was agonizing for the pain (I also have adenomyosis).

Two days ago finally a gyne from the hospital called me and told me that for him Visanne is too light and I should take higher doses of progesterone like Provera, OR a combined pill, in particular Femodene. He would go more for Femodene as he is concerned about the side effects of Provera (because I told him with 2 mg of Dienogest I'm experiencing enough side effects and I can't imagine higher doses what would do) but I don't know if I'll start it or not, I know that my body is settling down with Visanne.

What about your? What treatment are you doing for endo?

Also, how big are your cysts and what symptoms do you experience? Do you also have an endo nodule attached to the colon?

About the colitis, I'm on azathioprine 50 mg twice a day and asacol 4 tablets of 800mg and sometimes I use enema 2g.

But what really helps me with the ulcerative colitis is the diet: I'm on a REALLY restricted, anti-inflammatory diet that made me go on remission but unfortunately I had a really stressful period the last year and I had a flare up just a year ago. The diet works amazingly for the colitis but stress kills me.

I believe there's a strong connection between ossidative stress and ulcerative colitis and endo, I also read several scientific studies that prove it. It's not a coincidence that the last year exactly when I had a stressful time, I had a flare up and the cyst started growing (I wasn't aware of that).

Anyway, what medicines are you on for the ulcerative colitis? And how many times do you open your bowel per day?

I'm also experiencing so much gas!! I know that it's typical of endometriosis but it's the same for the colitis.

Usually when I have an ulcerative colitis flare up my nails shred horribly but now they're strong and healthy, so I don't know If these symptoms are due to just endo 😵

What about you, what symptoms do you have when you have an UC flare up? Xxx

[Hidden in reply to Eliade]

Hi Eliade

It seems like you have everything under control and know a lot about your illnesses and your body.

For endo I don’t take anything. When I was officially diagnosed at the endo clinic, they offered me 1. Hysterectomy 2. Laparoscopic surgery to remove endo although they mentioned since I have UC there is a risk that they might have to operate on my bowels and I might wake up from surgery with a stoma 3. Hormonal therapy. I was so terrified of these all and I sought natural treatment from a nutritionist. She prescribed me a tons of supplements and she asked me to cut out dairy, gluten, fast food, sugar and increase my intake of certain types of vegetables. I have been on this diet and the supplements since last June and my symptoms got better. My symptoms started few years ago, it was basically horrible pain like someone was stabbing you in your vagina and bum and I was bloated and felt like I was constipated but had diarrhoea. It always happened around my period but not every month. Apart from it, in 2018 I noticed a lump in my lower belly on the left side. After many scans, I know now that it’s the cyst on my left ovary. It is around 5-7cm and I have a smaller one on the right (3-5cm), and quite few fibroids in my uterus. My lower belly is always a bit bulging and mornings before breakfast when I need the loo, I can feel the stool pressing against my cysts and fibroids as it moves in my belly. It’s very weird but I know it is what it is because it happens all the time and once I went to the loo the feeling goes. The same happens when I need to pass wind.

For UC I am taking mesalazine suppositories and colazide capsules, but I change the quantity of the latest depending on how I feel. My symptoms for UC have always been the same, blood in stool and tiredness. Maybe the bloating too although according to my gastroenterologist that can’t be because only my rectum is affected by the disease.

I was a healthy woman until I got 40, that’s when all my health issues started. My period has always been regular and not too heavy. My stool the same. I go to the bathroom 2-3 times in the morning straight after waking. It’s funny how regular it is actually. My partner laughs about it a lot.

I am not sure what to do with the endo cysts though. I have the symptoms under control now, but I know they got bigger and eventually may cause problems. I am hoping that when my menopause arrives naturally that will sort out things. But that may take another 10-15 years.

You’re right about stress, it’s our biggest enemy. How are you holding up in the lockdown?

What is your endo treatment for? Is that a hormonal therapy? And what is the aim of it?

Which part of your colon is affected by UC?

Sorry this message got a bit long 😉

I hope you’re well and having a nice weekend!

[Eliade in reply to Hidden]

Hi Dive4Life,

don't worry about the length of the message, I like when someone explains things clearly, I'm the same way 😁 We basically have the same symptoms for UC, I also usually go to the toilet 2 times in the morning but lately, in the last week, I'm going up to 5-6 times in a day and that's what scares me at the moment, with blood.

Today I spoke with a gastroenterologist and he told me the only way to find out if I have a UC flare up is going to the hospital and having a sygmoidoscopy but I refused because I'm too scared to go to the hospital at the moment as I have a weak immune system due to the azathioprine. He adviced me to take the enemas for a week and see if the situation improves. If it doesn't, he may prescribe me a pseudo-corticosteroid and I don't really like the idea but I don't have other ways to stop the flare up if it is actually in course, if I don't stop it it can get worse 😟

I don't know colazide, does it work for you?

I'm sorry you have those two cysts and I agree with you, the options to "treat" the endometriosis are horrifying. I would never do the hysterectomy, it doesn't treat the endometriosis at all, women still get the pain after it.

I also don't want to have the laparoscopy but in my case the endometriosis is too extended and I need to remove all the lesions, I don't have any choices. Unfortunately I'm afraid you should have it too because only the diet can't remove the cysts and if you leave the endometriosis untreated it may spread to the bowel too and it's really dangerous. 😟

In my case I also have a 2.5 cm endo nodule attached to my colon and they didn't tell me they may do a colectomy. The may do the colectomy and put a stoma only if you have the endometriosis INSIDE the colon. Why did they tell you that? Do you have endo lesions around your colon too?

I had to start the hormonal treatment to avoid that the endometriosis grows more as there's the risk it may go inside the colon and I'm really scared it may happen if leave it untreated. If it goes inside then they may perform a colectomy and I don't want it to happen.

What is the diet you're on?

I did lot of research and I'm also going to take supplements for endo: vitamin A, C, B6, iodine, selenium, zinc and curcumin and Nac, I'm waiting for them to come as I ordered them. And I'm already taking calcium, magnesium, vitamin D, pine bark extract and melatonin. I'm also thinking to buy the DIM as it's really important to balance the excess of estrogens.

What supplements do you take for endometriosis?

I'm sure the treatment that I'm doing combined with these supplements will shrink the endometriosis

About the UC, I have it extended in all the colon, I have a pancolitis Xxx