I am 24 years old. I have had 2 laps and one full year of Lupron shots. I have been close to symptom free for 3 yrs, with only a low dose B.C. Last month I went to the doctor because of a lower back ache. I was give 3 rounds of 5 different antibiotics for a suspected bladder and uterine infection. My last visit to the doctor was exactly what I expected and dreaded…It’s back, again! The problem now is I have new insurance and this is a “previous condition,” nothing to do with endo will be covered. I work full time, attend college full time, and support myself. I can’t afford to pay for these upcoming treatments, however, I can’t afford this much pain. I need advise and quick!
My name is Nadine. Here I sit in my tiny apartment in a narcotic stupor. Tylenol 3 with Codiene, one every four hours around the clock. Aleve doesn’t work any more. A nightgown is my constant wardrobe now. My left side and abdomen hurts too much for pants. Besides, the gown makes it easier for the frequent runs to the ladies room (bladder pressure).
I am a newspaper reporter, but I haven’t been able to work for weeks. Thank God my publishing company has a generous, short-term disability plan. It will pay 100% of my salary for six months while I’m out of work. I only have six months to find out what’s wrong with me and get better. I am frightened that I will lose my job. It’s a 10-year career at stake. My gynecologist suspects endmetriosis and has scheduled an exploratory laparoscopy and hysteroscopy for Aug. 7, 2003. A second surgeon will attend to repair my belly button, which herniated or popped out a few weeks ago. They suspect that there may be a section of colon adhered to the belly button. They plan to place a piece of mesh behind my belly button for support when the surgery is complete. This started about three months ago with mild lower back pain and a swollen abdomen. My white blood cell count was elevated to about 15 and lab tests revealed traces of blood in my urine. We checked my records for the past several years and I have never had blood in my urine. I couldn’t get comfortable in any position except standing. Then my left side started hurting and I developed a small lump just under my left rib on the abdomen. It went away for about a week, came back then went away. When it came back again, it was much worse and the pain eventually grew to an excrutiating level and I had to stop working. I’ve had both a vaginal and abdominal CT scan, vaginal ultrasound, colonoscopy and IVP, all were clear. We didn’t make the potential endometriosis link until my general practitioner said this was acting like an infection or cyst in my fallopian tube or ovary and she asked about my periods. About a year ago I had two episodes of vaginal breakthrough bleeding inbetween periods. Since then, my periods have become very painful the week before menstruation and the first couple of days of menstruation. They have become very heavy as well. When I am menstruating, every time I sit on the toilet blood and large clots drip into the bowl. I used to have my period about every 28 days like clockwork. Now they are coming every 23 to 26 days and last for five to seven days, where they used to be a short three to five days. Sex has been painful for at least six months now and after sex I have what feels like menstrual cramps. When I visited my gyn about a year ago about this he said I was getting older, the body changes as you get older and I may even be beginning early menopause. It was nothing to be concerned about, he assured me. When I saw him three months ago about the lump and the pain on my side and abdomen, he said the pain was up too high and sent me to a gastroenterologist. That specialist found no problems with my colon. After my general practioner mentioned my periods, I went back to my gyn and he said we needed to “get in there and see what’s going on.” If I understand correctly, he will check my uterus area with a scope (hysteroscopy). For the laparoscopy, he will expand my abdominal cavity with a gas, make three small incisions in my belly, insert a scope and search for any endometriosis spots and for any cysts or tumours, etc. If he finds any he will cut and remove them, unless they are attached to critical areas, such as the colon or bladder. He has warned me that laparoscopy may not get all the lesions, if there are any, and that many women ultimately require a hysterectomy, which he said has a high cure success rate. I’m 41. Both of my children are grown and I do not wan’t any more children. I had a tubal ligation 16 years ago. I asked him if he found endemetriosis if he could just go ahead and perform a hysterectomy. I want to knock this thing out and get back to work. He said he could but that insurance companies generally won’t pay for it unless laparoscopy and medications don’t work. I’m a little frightened about the surgery next week. The doctor said the pain should not be intolerable and I should recover in a few days. Still, it is surgery, there will be pain. I’m sure it will be complicated by the herniated belly button repair as well. My poor boyfriend. We live together. He has had to go without sex for so long. I thank God he sent me an understanding man. He’s been great, done all the cooking and cleaning, the grocery shopping, everything. At my son’s graduation ceremony, I could not walk from the car to the auditorium. I cried through the ceremony and everybody thought I was being sentimental, but I was crying because I was in pain. I didn’t want to spoil the event as we had family come in from all around the country. My mother had a pacemaker put in last month and I went to Georgia to try to help her with her recuperation. But I had to leave the day after her surgery because my period started and I was hurting too much to help her. I really feel quite useless right now. But I am praying that the surgery leads to a diagnosis and, ultimately, an end to this pain. I plan to update this after the laparoscopy to let you know the outcome. I may not have endometriosis. But I think it is important for all women to know that painful sex and debilitating menstruation is not normal and should be reported to a physician.
Re: SCHEDULED FOR LAPAROSCOPY
I read your story with interest and I apologise if my response sounds blunt.
First of all – a hyst is in no way a cure for endo – many women who have adeno no longer have problems after a hyst, but for women who have endo at least 90% of them continue to have problems. Endo doesn’t need the ovaries to produce food – it makes it own. If you have a hyst, but you have endo on the bowel, bladder, ureter, etc. the endo doesn’t go away – it stays there and can cause a lot of problems.
Second – it’s very possible to remove endo from the bowel, bladder, ureter etc etc as I’ve had that done by a top endo specialist in August 2001 and I’ve been pain free since.
Make sure you rest a lot after your operation – whether it’s a hyst or a lap. Why is your doctor not going to remove endo he finds on the bowel or bladder? Could he not work with someone who can do this for you?
I really wish you all the best and I hope the surgery does work for you. Please keep us updated, and you’re welcome to post any questions you may have on the forums.
Re: SCHEDULED FOR LAPAROSCOPY (Score: 1)
Arianna, thank you so much for your response. It is very comforting to know that I am not alone at a time like this. It is very difficult to talk to friends and family because they dont really understand what I am going through. So to have an caring and empathetic ear is very comforting. I guess we’ll have to see what the laparascopy reveals. If I do have endometriosis, I plan to find an endometriosis speciliast. I am in Charleston, S.C. Can anyone recommend a reliable, compassionate specialist in my area please?
Re: SCHEDULED FOR LAPAROSCOPY (Score: 1)
I have just found this website and read a few comments – Yours peaked my interest. I have lived with endometriosis for 8 years and it has been progressivley worse. The medications dont work anymore – either to minimize endo or to treat the pain. The laporoscopy didnt do anything. The specialist wants me to consider a hysterectomy – we are not having more children. I am hoping to find success rates for a hysterectomy as treatment for endo. What can you share with me as far as the likelihood of symptoms after surgery?
Re: SCHEDULED FOR LAPAROSCOPY
Wow. First off, I wish you all the best. 2nd, I’m still new to this endo thing and didn’t realize the bladder thing was part of my symptoms. I’ve been going a lot more frequently lately. Also my periods: I, too, used to be every 28 days like clockwork. Then I started with the pain and the gyn put me on the pill. And then my period got messed up. I thought it was something to do with the pill. Anyway, I’m also having a lap. I was supposed to have on 7/28. I got all the way down to the Surgery Center and was told the laser was not working. The repair guy was coming later that afternoon, but didn’t know if he could even fix it that day. So I called the Dr’s office and the lady who schedules surgery was quite pissed at the surgery center. The upshot of all this is my surgery got rescheduled for 8/11, which is today! I’m very nervous.
But anyway, thanks for letting me know some of these symptoms are normal, and not just me. And I hope everything works out for you. 🙂