Many health problems -Surgery concerns

I just discovered this forum tonight. I have many concerns but my gynecologist and family doctor are not providing answers.

I am 45. I have Crohns disease, Fibromyalgia, Polycystic ovaries, severe Arthritis, and was recently diagnosed with Diabetes (I was on Prednisone for many years). I take Methotrexate (a chemotherapy drug) weekly (for the past 10 years) for my Crohns. I am very anemic and am trying to build up my blood before the surgery (in 4 to 6 months).

I was supposed to have a D&C in January but the surgeon couldn't get into the uterus. He said there is a blockage of some sort and cannot identify it. He said it could be a growth, cyst, tumour ... but can't say for sure. Because I have severe bleeding with my periods a hysterectomy has been advised. This should also help my Crohns (which is made worse by the anemia).

He doesn't want to remove the cervix because of the increased blood loss during surgery (he says many blood vessels go through that area). Since my blood count is low, he says it is too risky.

Here is my concern ... my mom died of breast cancer. Other relatives on my mom's side who have either died from breast or prostate cancer include her sister, her brother, her dad, and one sister right now has breast cancer. A daughter of that sister has it also (she is 38). I am reluctant to leave the cervix in because of the relationship between breast cancer and cervical cancer.

Did any of you have a great deal of extra blood loss during surgery by having your cervix removed? Should I be pressuring the doctor to get me in sooner because the growth can't be identified (he didn't take a biopsy for some reason)? Other than taking extra iron and other vitamins, do you have any suggestions on how I can build up my blood?

I am asking these questions because my family doctor just shrugs his shoulders when I ask them of him and my gynecologist is always eager to get me out the door so he can see the next patient.

Welcome to this great site, you'll receive wonderful support here and have the freedom to ask as many questions as you want. First of all, I'm very sorry to hear of your many health problems and can only imagine what a worry it is for you now to face a hysterectomy.

My thoughts are that you should seek a second opinion straight away, and hopefully find a gynae who is sympathetic to your genuine concerns. I think you should have been offered follow up tests to find out what this blockage could be. Has an ultrasound or cat scan ever been suggested? These would give some clue as to the nature of the blockage.

As far as I know, it is breast and ovarian cancer that are strongly linked, but please check with your doctor on this. If there is a family history, some surgeons would recommend removal of the ovaries. At any rate, some doctors prefer to remove the ovaries at 45 and upwards as they feel menopause isn't that far off anyway. (although some women don't have it until they're 55 or later!)

My cervix was removed, and as far as I know, it didn't create any excessive blood loss. It was removed separately from the uterus. The uterus and cervix are often taken "whole" together, but I had many fibroids which prevented this. When fibroids are close to the cervix, the doctor will often leave the cervix in. Maybe that is why your doctor talked of this? Maybe he thinks this blockage is a fibroid.

Your family doctor should be offering more information and support to you, what's with the shrugging of the shoulders? You must find another doctor who can answer your questions, or at the very least go back with a list of questions. It's amazing how doctors suddenly get their act together when they see the patient unfurl a long piece of paper from their bag! Look him in the eye and say "I have alot of questions and I want some answers".

I wish you luck and perserverance. Your questions are deserving of answers, this is your body, your life! You have a right to know, particularly since you have such a medical history.

love to you
papaya

Thank you Papaya (Papaya is my favourite fruit by the way).

He wants to remove everything but the cervix. He did a trans vaginal ultrasound but it showed nothing was there. It was only when attempting to enter the uterus to do the D&C that the blockage was discovered (it is 4 cm inside between the cervix and the uterus). He insisted to my husband and myself that he has no idea what it is. He said he tried every tool he had but nothing could get past it.

He had me return for another attempt while I had my period, hoping that the uterus would have opened up enough to let him in. He did this without anesthetic and it was very painful. But he still couldn't get past it.

In late 1998 I had a D&C (history of bad periods) and there was no growth at that time. It has developed since.

What really annoys me is that he said he doesn't know what it is but then said, "It's not cancerous". I asked him how he could know that for sure since he didn't take a biopsy and doesn't know what the growth is.

I gave him an illustration: You have a balloon. I have no idea what color it is but I know it isn't green. Does that make sense?

I saw my arthritis specialist and told him about all of this. He became quite alarmed and immediately got on the phone to talk to my family doctor about it. He said that if it was his wife or other family member, he would not be waiting 4 to 6 months to have the growth and all removed. He said that since they can't identify it, they can't rule out cancer. He sees this the same way I do.

I live in Canada and it takes forever to get a second opinion. There are too few doctors to go around. It will take at least six months for me to even see another gynecologist for an initial consultation. And family doctors are hard to come by. Most are not taking new patients. I was told by another health professional that my family doctor is one of the top 5 in town. I hate to think what the others are like.

I am concerned about infection after the surgery as I cannot quit the chemo drug (or the Crohns gets very bad - internal bleeding from 8 ulcerated sites in my bowel). My immune system is in bad shape so it will take some time for me to heal.

I will compile my list of questions to talk to the OBGYN on April 16th. Thanks for the suggestion.

And thank you for your encouragement.

Hugs

You poor dear, I'm so sorry you have all this going on at once!

If a second opinion isn't possible within a short time frame, then I would see if your family doctor can't put the pressure on your GYN to get the hyst done sooner. Do you have a hyst date scheduled at all?

I too believe it's the breast-ovarian link (and colon too), and not cervical, regarding a cancer connection. Double check with your doctor on that.

Praying all goes well for you!

I haven't heard that bleeding during surgery is due to the cervix- I would ask another doctor. Try asking your question on www.obgyn.net (the women's health forum). There are volunteer gyn's who will answer your question (free!)- it might take a day or two but sometimes you can get an answer in hours.

Also, I agree with the others- that there isn't a cervical/breast cancer connection- but ask the docs on obgyn.net to be sure.

Thank you for the suggestion that I visit www.obgyn.net

I searched through old messages and didn't find an answer so I have posted my questions there. Finding all of you is a huge blessing.

Thank you so very very much!

Hi Wispy,

Sure am sorry to hear of your Dr dilemna! Thank goodness we still have options here in the states!

I have Crohn's also. Fortunately, a mild case. One resection 28 years ago but now a new area closer to the ICV altho it is in remission.

I'm glad to see Wachusett recommended obgyn.net. Its a good site. I assume you are probably aware of and have been to the ccfa.org website for Crohnies as well??? Another great site. Just in case, it is: http://www.ccfa.org I believe there is also an IBD site specific to Canada similar to the ccfa.org site.

I have a 5 x 5 x 5 cm simple cyst on my left ovary. Generally they recommend removal at 4cm in menopausal women. But the gyn/onco my gyn referred me to said we can wait and watch up to 8cm as long as no problems and it remains a simple cyst. So we are doing utrasounds at 3 mos, 3 mos, 6 mos, 6 mos and annual as long as there is no size change. My decision and choice. Just starting the first 6 mos ultrasound wait but so far no change in size between the two 3 mos ultrasounds.

Of course, I have no history of cancer of any kind in my family, either side. That means I am really exploring my options and this site is wonderful for this!

With your family history of various cancers even if the cervix is removed you would want and should insist on a PAP smear annually.

Ask Dr May at the ccfa.org site about the Methotrexate, surgery and infections. You might also want to ask your wonderful Rheumatologist (who sounds like the only GOOD doctor you have) if he/she could do a little more pushing on your family doctor to get you moved to an emergency status (and hopefully some other gyn as this one sounds like a loser to me). I don't know what the patients rights are in Canada but here in the states you could go to the hospital where your D & C was done and request a copy of the full surgical report.

Your question about the balloon to the gyn was EXCELLENT! And it still didn't get you a decent answer?? Sheesh.

You know, someone posted a very thorough list of questions she had for her Dr before surgery and it might help to read that, add your own questions to the pertinent questions posted there and then sit down w/that gyn and make it clear you are NOT budging until he comes up with all the answers. You might also request that your next appt with him be his last appt of the day. Then he has no excuse to hurry on to the next patient! Just take a deep breath and tell him you are NOT leaving until you do have some answers. And ASK him WHY he didn't biopsy whatever was blocking his access for the D & C. Stress your family's history of various cancers. In other words, rattle his cage! Big time.

Any chance you could get in any faster with a gyn/onco rather than an ob/gyn? Maybe someone less busy delivering and more experienced w/GOOD gyn surgery would be a MUCH better choice for you. With your family doctor and your Rheumy pushing for an emergency consult you might get in sooner. You need to push your family doctor some more and more and more.

With all this stress how is the Crohn's doing? My Crohn's symptoms were pretty mild and under control until my husband needed back surgery, serious back surgery, and that is when my Crohn's went out of control and I ended up needing that emergency resection 28 years ago. And it was 4 years of stress with an aging, ill mother and having to deal with a half sister who is bipolar plus working a heavy duty, overburdened mail route that brought on the new area of Crohn's we now, thank God, have in remission.

Good luck and God bless. do stay with us and keep us informed. We care.

Wispy,

I saw your question (and answer) on obgyn.net. If you don't feel it was answered thoroughly, try posting another day when one of the American docs are answering. Also, try to write your question a little more succinctly. The foreign doctors really mean well,and I admire them for volunteering their time, but I think there's a bit of a language barrier. The doctor who gives the best answers is Dr. Braun. He usually answers one day per week but I don't know which. If you scroll through recent postings you might be able to figure it out.

As far as the foreign doctors, the ones with the best language skills seem to be Dr. Fiorini from Italy and Dr. Cristalli from France but they are not on the board much.

I would recommend you wait two days to re-post, re-word your question and post under a different name. Otherwise you risk getting "flamed" by other posters. (NOT by the doctors). It happens a lot, unfortunately- it's not as nice as this forum.

Thanks for the advice. I was surprised by his curt answer. I will do as you suggest.

The support at Hyster Sisters is wonderful!

Lynn

Wispy,

It look like you might be able to catch Dr. Braun on www.obgyn.net today. I would even try putting his name on the subject line (even though he'd answer without it). Try this in the subject line : "My doctor says removing cervix too risky - second opinion please." Try to write as briefly as possible, but include all the relevant information about your case.

Good luck.