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Starting Endometriosis Treatment

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Old 05-17-2010, 09:00 AM   #1
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Starting Endometriosis Treatment

Hi. I am 43 and have a long history of gastrointestinal pain and interstitial cystitis symptoms. My periods have been easy up until about 10 years ago where they gradually started getting heavier, more clotted, and crampier. I've been going to different specialists for the gastro and urinary stuff but never went to a gyn because I didn't think the pains were related and I thought my menstrual issues were common since women always talk of cramps. My lower abdomen pains are pretty bad upon waking every morning and they slowly subside through the day. They are daily and tolerable for the first half of my month and starting at midcycle the pain increases in intensity as the days build until my period starts. The first day of my period is the worst then the month starts again. March, April, and this month have been the worse. It was not too bad before this spring but now it's slamming me. I did not discover that it was such a definite pattern until April when I started keeping a symptom diary.
In March I had pink spotting often and more pains than usual and went to see a gyn. All of my paps are always normal and they never find anything that alarms them. Because of the spotting I had an internal ultrasound done and they found a uterine polyp, a small fibroid, and an endometrial cyst on one ovary.
After that diagnosis I began researching endometriosis and was shocked to find out that all of my gastro and urinary symptoms could and probably are from the endo. That answers a lot. The other doctors could never find anything conclusive and i knew something was wrong but I kept hearing that all tests were normal. None of the diet changes and other gastro treatments would work consistently and I couldn't understand it until the endo diagnosis.

My choices were lupron for 3 months, continuous birth control pills (femcon), or a laparoscopy and D+C. I am choosing to start with the birth control.
My question is: Because my pains are daily, could it be endo adhesions on my intestines? Can anyone who has or has had adhesions please tell me their stories? My thoughts are that I will start with the pill then do the laproscopy and get the endo and adhesions removed. I am NERVOUS about the lap because of the complication of causing more adhesions from the surgery. I scar and adhes (?) easily. I'm also scared to get a D+C. I have 2 kids and am done so maintaining my fertility isn't a worry. They can have my uterus if I was sure that it would stop the daily pains.

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Old 05-17-2010, 10:58 AM   #2
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Re: Starting Endometriosis Treatment

If you have adhesions, the doctor will be able to see them with the laporoscopy. Adhesions are a *****. I won't lie to you! But since you are getting on the pill, that should help the endo. (Should doesn't necessarily mean it will.) You know how that goes....endometriosis is so unpredictable.

Best wishes to you in your treatments.

Old 05-17-2010, 02:41 PM   #3
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Re: Starting Endometriosis Treatment

Hi, Sorry to hear about your troubles.

Here's my story.

I have had severe 'period pain' for years. It used to be really severe and I dont know how I used to drag myself to work when I had it as I was doubled over in pain. A lot of the time it would be similiar to what I imagine a contraction to be (I havn't had children) and would build up to a peak and then subside. I went to the doctors approx 10 - 15 years ago and was prescribed some pills -(I presume pain killers) no tests were carried out. It appeared obvious that docs just thought I was moaning over nothing. After several visits to the doctors over several years, one doctor finally thought that I may have endometriosis and sent me to the hospital to have a internal vaginal scan. After this scan my pain suprising eased considerably. However when I went for the results, it appeared that the gp could not find anything on my records and said that they would request the details from the hospital, but they never materialised. It was only when i changed address and therefore changed doctors that I noticed that endometriosis was noted on my records. Unfortunately every doctor's visit ended up with me requesting my GP contact the hospital but my results never materialised.

About 18 months ago, I began having problems with my periods, they became longer and longer over a period of time. I also began to experience pelvic pain on my left hand side, and noticed when my cat walked on this area it was tender. I went to my doctors and a locum doctor suggested I had a laparoscopy. She told me that endometriosis can only be diagnoised by a laparoscopy anyway and so my previous scan was a waste of time. I had also been trying for children for 6 years and so this was also another reason for my referral. My gyny agreed to do the lap and also said he would check my fallopian tubes to see if they were blocked. However they were certain they would find nothing (an internal examination also found nothing)

After the surgery I was told that they had found a mass that had grown around my bowel (large intestine), fallopian tubes and ovary's and it was sticking everything together. My very experienced gyny had NO idea what it was and said they had never seen anything like it. I was told the devasting news that it may be cancer. My bowel was also dilated, above the sigmoid area of the colan. They had taken photos and had sent them immediately to another surgeon for his opinion. They had not taken biopsys of the mass as they were scared of perforating my colan. So I had to wait a week for the cancer results (taken from blood tests) . Thankfully they were negative. They didnt do the tests on my fallopian tubes as they were worried in case it was some sort of infection and spreading dye through them would make it worse.

I had several tests/examinations (as they also thought I may of had colon cancer) including a colonoscopy which revealed part of my colan was very narrow - to the point they had to withdraw the camera and put in a smaller one. They also found ulcers all over my intestine which they thought was crohns disease but tests came back inconclusive for that. An operation was agreed to remove the mass and to do a colan resection - as my colan was due to close off completely which was life threatening. They would also be able to diagnose what the ulcers were, although they later believed I had diverticulitis. They was hoping for keyhole but I ended up having a 12'' incision. The majority of the mass was removed, and well as two large 10cm cysts (which was under the mass and therefore had not previously been diagnosed), my appendix - which was extremely inflammed and 10' of my large intestine'.

To cut a long story short the mass was finally diagnosed as endometriosis. It has grown under my large intestine and had strangulated it to the point I needed the resection done, and the stricture hadcaused the bowel to balloon out above it due to the pressure it was under.

My surgeon/bowel consultant believes my suspected crohns/diverticulitis was endometriosis, however I think he is referring to the outside appearance of the bowel and has forgotton about my internal ulcers so I am following that up at the moment and I am awaiting to hear from him.

Unfortunately my endometriosis was so severe it filled the majority of my abdomen. It has also resulted in my 10'' of my intestine being removed and also half of my left ovary being removed as well. Doctors have said that perhaps I should of had a hysterectomy due to the severity of it. He has said I will always be under investigation now to keep tabs on it otherwise I will end up with the same problem all over again.

I also had complications after the surgery and was readmitted due to a burst abscess and possible peritonitus (as well as other problems). Thankfully I am fine now. but I am due to have another op around October to tidy up my scar (as it looks a mess!). There is a 50% chance I will need another resection in the future due to scar tissue build up and so it carries on.

My motto is if in doubt, check it out. If proper checks had been done on me all them years ago, it may have prevented this op having to take place. I may also be infertile to which I am now expected further checks to confirm this. I was told before the surgery it would virtually be a miracle for me to get pregnant, although I dont know whether that is now the same post op.

Sorry to have gone on for so long. If there are any questions I can answer for you, I will gladly do (and will try not to make my post so long in the future - sorry!)

Just trust your own common sense, and listen to what your own body is telling you. My case is obviously more of an extreme scenario, I dont want to alarm you or anyone else. But getting something checked out will hopefully give you peace of mind.

Wishing you well.

Old 05-18-2010, 06:04 AM   #4
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Re: Starting Endometriosis Treatment

Wow Chocolicious, you have quite a story. Thanks for the long post; it was just what I needed -- to hear other gastro-endo stories. I hope that everything turns out alright for you and for any future pregnancies. Your symptoms must have been very perplexing since the doctors seemed to be confused.
I took my first birth control pill last night. Did you try any of the hormone treatments? Thankfully I am done having kids or the pill would be tough to do. Right now I am trying to research finding an experienced endo surgeon in my area. From what I've been reading, most gyn don't want to touch it if it is on the intestines and I should find an experienced gastro-surgeon. The trick is to find one that is very familiar with endo. I did find a name yesterday and he graduated 47 years ago. I'm nervous going to an old guy because the younger guys would be more up to date on the current techniques and I'm concerned that an older surgeon will do more invasive procedures since that is how they were trained.
So how was your healing after such a big surgery? How have your symptoms changed since the surgery?

Old 05-22-2010, 05:21 PM   #5
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Re: Starting Endometriosis Treatment

To be honest, apart from my awful period pains all those years ago, my symptoms were not severe. I had intermittent pelvic pain and occasionally a pulling sensation when I walked. I just thought that perhaps I had damaged a muscle. If I hadn't experienced odd periods and spotting I probably wouldn't of had it checked out. My bowel was really narrow due the stricture. My consultant said I would definately need an op in the next ten years but I didn't want to risk my life by waiting for my bowel to close off or for it too burst due to the pressure it was under. He also said I would cope with the operation better now as I was younger (I am 38). That did the trick for me. As they did not know what the mass was at that point I said I wanted it out and so he suggested they do the bowel resection at the same time.

I could of done without the complications to the surgery. I had only been discharged a day when I was readmitted. The scary thing was my gp surgery was not concerned with my symptoms and just wanted me to buy some sachets to replenish my lost fluids due to my vomiting. When I went back into hospital, I had a loop in my small intestine causing an obstruction, a pocket of trapped air, fluid around my liver and in my pelvic region, dialation of my large intestine indicating infection, my White blood cell count was raised showing signs of infection too and my bowel had gone into shock and shut down(known as an illeus). On the night I woke up to find my pj's saturated through ( my wound was leaking). I had three of my 25 staples removed to let it drain out, I didn't realise at that point I had had a abscess that had burst inside me, which was poisoning my insides. Thankfully I was put on antibiotics as soon as I went into hospital which had kept things under control. After taking the staples out and other ones the following day, my wound burst open by about 6 inches, which I had to have packed and redressed every day for 2 months. They more annoying than anything because I couldn't relax and enjoy my cooperation period as I had to go and see a nurse every day. The day I was readmitted I felt really Ill. My stay in the hospital wasn't particularly brilliant either ( I live in Britain and we have the nhs system).

However generally speaking my op and the recuperation period was a lot easier than I expected. I did try and do bits of housework etc in the first few weeks and I regretted doing that, but it was my own fault as I had had instructions not to do anything fir at least 6 weeks. I only tried to do things because I thought I was fitter than I actually was. I had an epidural after surgery for pain relief (I wanted morphine but the hospital didn't want to listen to my request). They messed that up too, by putting double the dose down my left side which left me paralysed for 3 days (which made me panic). However it was good pain relief and when they took it out 3 days later I didn't even need general pain killers! For me the surgery/recovery was loads better than I expected it to be; I was pleasantly suprised.

However I will become an hypocondriac now. My gp thinks I must have a high pain theshold, due to what was all going on in me and not being in pain; but now any twinges I have, I will be straight down the doctors.

I am yet to see my gyny, so don't know what will happen fertility wise. He has mentioned ivf a few times, but I don't want to go down that route and due to my age I am not sure if I want kids now. Due to scar tissue my gp has told me I have an increased risk of an etopic pregnancy as well( although how high that risk is, I dont know).

So are you looking for a surgeon who will perform the op for you? How severe is the endo? I had a general surgeon and my gyny both operating on me. Is that something that may happen then in your case or could it be an option for you? Find out as much as you can. I needed questions answered before had my surgery as I wanted to be sure I was making sn informed decision. There was also a risk that I may of ended up with a temporary colostomy bag, but thankfully they managed to do the op without me needing one. Sorry to go on for do long again! What am I like!? Hope that helps you. Remember I came out fine in the end, it's just that mine wasn't a straight forward case and I had complications. You probably wouldn't experience what had happened to me. So don't let this put you off! Any more quesions just fire away(and I will just try and give you a straight answer next time!).


Last edited by Chocolicious; 05-22-2010 at 05:28 PM. Reason: Spelling

Old 05-22-2010, 09:59 PM   #6
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Re: Starting Endometriosis Treatment

Hi Chocolicious, sorry it took me so long to respond. I didn't get the notification that there was another post to this thread. I just happen to be looking just now and i saw you.

Wow, you had some scary complications! You must have a high pain threshold... I can't imagine.

I don't know how severe my endo is. I need to do a lap to see that and I seem to be stuck and unable to make the next move. I think I have "sticker" shock because every time I think of all the consults I'll need to get with different doctors as I search for the right one I get concerned about the office visit costs. So far they found endometriomas on my ovaries. I think it is on my intestines just because of all the intestinal issues I seem to have that don't respond to anything else. I don't want to have the scope lap done by a gyn only to have her see it on my intestines and not get rid of it because she "doesn't do the intestines because of a greater risk".

I'm probably worrying for nothing but like I said I don't want to pay for all the consults yet.

Old 05-23-2010, 01:18 AM   #7
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Re: Starting Endometriosis Treatment


I can relate to your story, and all the misdiagnosis's. I started the same way, and ended up with the labor-like pains on my right side. I could never get a handle on the cycle, and never really put it together with my period. It would last for day on end, leave and return at odd times.

I already had many major health problems, 4 strokes, heart attack,l kidney failure, and now this! I started at the GI doctor, had the colonoscopy, diagnosed with diverticulitis, eventually IBS, pancreatitus, and none of
the therapys worked for me either.

Until February 15th...when I was hit with an excruciating bout of the mystery pain. I was admitted to the hospital for 7 days, kept on round the clock morphine, and dilaudid IV's, while they did tests. Finally someone mentioned the word endometriosis, and bam, that was it.

I started with a new gyno, who gave me my options, which were one. The lupron depo shot. Typically, a total hysterectomy would be the treatment. I am 49. But I am too ill for a major surgery of any kind, so that was out. So I am on the lupron, my second shot is sitting on my table, ready to take to the doctor Monday morning. Besides the great expense ($2,000.00 per shot), I feel it has been a good choice for me.

Right after the first shot, and I mean immediately...the hot flashes hit hard, and I swelled up like a balloon, but those symptoms went away in time. The pain is WAY less, but I do have pain medication for the times when it is too much. I am hoping after this second dose, my symptoms will be even better.

You do get thrown into instant menopause, which has it's moments...laughing and crying at the same time, the mood swings, the hot flashes, night sweats, but you can get through menopause in no time. I was in perimenopause already.

I couldn't take the BC pills either, due to my blood pressure and kidney failure. Just another possibility to think about.

I wish you the best!

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