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Old 04-22-2010, 08:17 PM   #1
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Cancer/Endometriosis? What? Bits of grossness here, sorry. Sick of Pain.

not sure where to post this, so I will try here first:
I have a history of endometriosis (I am in my early 30's). I have been on BCP continuously for 6 years. There is no reason to stop them at any point as the bleeding is medically unnecessary and I am not having children. No previous pregnancies and do not plan on having one.
I have not had an ultra sound for a number of years, as the doc told me that as long as I was on the pill, new endometriosis related cysts would not develop, and therefore she did not recommend any further ultrasounds. However, I believe since I was untreated for years, those cysts most likely BLED, and caused adhesions, correct? Those would still be there, right? It has been three years since I saw Gynolady last, because the exams are horribly painful, and although I have pain she refuses to prescribe any meds for me, and I find this to be unacceptable (it seems as if she doesn't believe I am an pain, or the pain is 'normal'). This is insulting and honestly, who wants to go home and have to stay in bed for three days because their doctor 'doesn't believe in pain meds'?
Over the past year, I have become increasingly concerned about the changes occurring. Going to the bathroom has become difficult, as I have to press on the outside of my lower buttock to 'help' the stool out, all the while this is happening there is tremendous pain in my pelvic area. The stool feels as if it is coming out sideways. Very painful.
A while back, I felt inside the vaginal area to see if my cervix was hanging down, and in place of the normal little cupped area that one would feel if they touched their cervix, I felt a strange round thing, and further along that surface, I felt small pimple like bumps. (No history of anything of STD's, not an option)
I immediately assumed I had a prolapsed uterus. Still avoiding the doc, I went along with my activities but they are limited because of the pain.
For example, sitting upright is painful most times, and as stool moves through the last parts of my colon, there are excruciating pains (these only last for a minute or two at a time) and THAT is my clue that I have to go to the bathroom, not the usual pressure like sensation that I would normally have.
The past week, the 'endo' pain sensations as I have always called them, have been intense in my back. There is no bleeding other than red clots in the mucus and after a very painful bowel movement three days ago, when I wiped, there was blood and a large clot. There was blood in the stool as well. Yesterday, I wore support hose all day because I grew tired of holding my lower abdomen. If I press on my rectum through my clothing, it is very painful (rectal and vaginal pain, along with the ovarian endo pain) I feel terribly bloated, I am not heavy but my lower ab is swollen - my grandmother had ovarian cancer. My mother had one of her ovaries removed and has had a history of uterine prolapse.
I am not one of those "ooo it must be cancer' worriers, but my father was told for YEARS that he had irritable bowel syndrome, turned out he had carcinoid syndrome, which means he had cancer that had started out somewhere in his colon most likely, (according to the docs) and it was not properly investigated early on. My mom's sister had a total hysterectomy when she was my age, not sure of all the reasons.
I have been battling the endometriosis since I was 18. I told the doctors that something was wrong, and I suspected the endo. I was not diagnosed until I was 26. They finally believed me after they found about 5 inches of mass on both ovaries. They had told me for YEARS that I was 'too young to have endo'. I kept going to doc after doc until ONE of them finally said - whoa - it sounds like you have endometriosis.
I have an appt. tomorrow, and I refuse to walk out of there without:
1) Some answers - I want to know - at WHAT POINT DO THEY SUSPECT CANCER? With the exception of my mother who is still living, everyone in my family has died from cancer. Do you all think that I need to press this issue?
I am in pain all the time, I am so freaking tired and now I am concerned.
2) A follow up plan. After reading around on this site tonight, I have noticed a lot of women with painful conditions are being sent home because these are 'normal' painful conditions. Hello? Unacceptable.
3) Some sort of pain meds! I am hurting and unable to sleep. My GP has been giving me small quantities of pain meds (because she is kind and is not afraid of the DEA and she knows I am in pain) but the doc I am seeing tomorrow is the one who will be treating me for this problem, isn't is her responsibility to send me home comfortable?

I have been living with pelvic pain/pressure and discomfort for years. I am tired of it.
Isn't there also a reasonable expectation that I be medicated for my pain, or is this just a fallacy?
Isn't there a certain point where the docs need to be more aggressive, since my entire family has been wiped out by cancer?
Ok - sorry this was horrendously long and probably boring, but I am fed up, tired and now I am finally going to go complain to the Gyno tomorrow.
Any ideas, thoughts, same experiences, etc.? I have had some gallbladder issues, acid reflux, etc. over the years, so there seems to always be some sort of abdominal pain of some sort going on.

Thanks!

 
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Old 04-23-2010, 04:15 PM   #2
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estria HB Userestria HB Userestria HB Userestria HB User
Re: Cancer/Endometriosis? What? Bits of grossness here, sorry. Sick of Pain.

Hi,

I would request a colonoscopy. Blood in the stool can be due to many things but you need to rule out the more serious causes and put your mind at rest. Depending at what age your father was diagnosed, you should be getting regular colonoscopies .. I believe it is ten years prior to when your relative was diagnosed.

If your mother had ovarian cancer then this is certain a good reason to continue to have regular ultrasounds to keep an eye on your ovaries. Endo will continue to form as long as you are getting estrogen. The pill contains estrogen as well as progesterone and although you may be on a low dose pill perhaps, you may simply be retarding the growth of the endo and not stopping it altogether. I think it is quite reasonable for you to request an ultrasound, especially in light of the pain you are having.

For the pain you should request a strong anti inflammatory like Naproxen. This will help with combatting the prostaglandins that actually cause the pain, rather than masking the pain with pain killers (that may become addictive .. you definitely don't want that). Advil works too but the Naproxen can be taken once a day and Advil has to be taken several times a day. A strong heating pad also works wonders on this type of pain, as do warm baths. Ultimately, the cause of the pain, especially if it is endo, will have to addressed but this may help you to cope in the meantime.

Ask for the tests that you need. I do not think this is unreasonable and neither should your doctors.

I hope everything works out. All the best.

Estria

 
Old 05-04-2010, 03:50 AM   #3
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Join Date: Jan 2010
Location: Uk
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Chocolicious HB User
Re: Cancer/Endometriosis? What? Bits of grossness here, sorry. Sick of Pain.

Hi, I just had to have a bowel resection due to docs discovering severe endometriosis that covered the whole of my tummy including the bowel, hence the resection. It was the same for me in that I suspected I had endom after years of severe period pain and the right tests wasn't carried out and nothing was followed up. I too would ask for a colonoscopy, and perhaps a investigative laparoscopy. Please give us an update when you can.

 
Old 06-01-2011, 11:42 AM   #4
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Jules 59 HB User
Re: Cancer/Endometriosis? What? Bits of grossness here, sorry. Sick of Pain.

I am astonished that your doctor refuses pain relief its outrageous! Firstly I would demand not ask for a C125 test, this is commonly used to find if by any chance there are any cancer markers, id say this is definitely your first port of call. Secondly Id ask for a CT Scan or Ultrasound. Modern CT Scanners would pick up anything unusual
cysts, tumours, large (but not small deposits of adhesions) an ultrasound should pick up smaller ones. The CT Scan would xray all your abdomen, the other option but is a Colonoscopy but this can be very uncomfortable as they put a camera up your bottom to see whats going on, whereas the CT Scan does pretty well the same job without discomfort, some say Colonoscopies pick up smaller bowel blockages,tumours etc
its debateable! Ive had Endometriosis problems for years and had two fallopian tubes removed separately in ops after being fobbed off with IBS diagnosis and depression, Im sure I do have IBS and depression etc but I knew there was more to it and sure enough biopsies on my removed tube in 2007 proved it was damaged by Endo and Adhesions.
In fact I had loads of Endo and Adhesions (scar tissue) adhering bowel to ovary and also on the other side and round belly button area, they removed as much as was safe to do being near the bowel. The trouble is women have so much equipment in such a limited space Endo and Adhesions can spread out to other organs such as bowel, bladder,
ovaries etc and surgery rarely eradicates it all whatever they claim. Adhesions I believe are only recently being taken seriously by surgeons and now they are reluctant to perform pelvic surgery on women unless it becomes a serious, no stop painful problem thats getting worse because of the huge risk of adhesions with each surgery more forms.
Its a vicious cycle and horrible for us sufferers. I had a CT Scan they told me Colonscopy would be extra painful for me due to suspected adhesions possibly on my bowel too and often for Endo sufferers generally. To my surprise it also picked up I had Diverculitis Disease and Hiatus Hernia, plus previously Gyne found I had prolapsed uterus
so basically a mess! I have bowel problems too and codiene based painkillers which i take Co Drydamol help pain but make you horribly constipated so you need to take Fybogel or Fybogel Merbervine (with anti spasmodic) or Lactalose to soften stools which helps them transit better. Diverculitis is where pockets form in the bowel which feaces collect and if not passed can get infected and risk Peritonitis which is serious.
So yes definitely ask for CT Scan if god forbid it was a tumour it would pick it up im sure.
Blockages in the bowel can also be adhesion build up which also needs to be addressed
as a complete blockage would be an emergency situation. Either way if your GP does not refer you change doctors! Im still not cured and suspect Endo and Adhesions is also a problem as well as the Diverculitis its a case of pain management, Hysterectomy has been mentioned but again due to adhesion risk and history they are hugely reluctant to do this unless im climbing up the wall in pain - great! They hope as im 52 and menopausal the change ie drop in oestrogen levels (oestrogen feeds endo) should reduce new endo growth/adhesions but its a nasty waiting game! I tried Zoladex injections monthly to stop periods a year ago so oestrogen levels would drop and apparently if that works it tells them its more endo your problem if it doesn't it means adhesions are the bigger problem of the two plus they gave me synthetic hrt (very low dose indeed of oestrogen as this fuels endo) but im no longer trying that it did not work!
Prolapsed Uterus can push on bowel also, there's just so many things it could be and without further investigation you will never know. Pelvic exercises apparently help prolapses (strengthen pelvic muscles). Well no definitely answers they still know little about Endo but you must get this checked out, bleeding can be anything even heamorroids (piles), they generally say if blood is bright red its from lower down if dark red or brown it comes from higher up (bowel) which needs checking asap. Vaginal bleeding can be Fibroids also. Stop guessing girl and demand further investigation, hope this helps! Jules

 
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