Tag Archive | hysteroscopy

Reader’s Choice : Endometrial Polyps — Bloomin’ Uterus

Great article on endometrial polyps from one of my fav blogs – Bloomin’ Uterus! Endometrial polyps can occur with adenomyosis, and it is important to be educated on this disorder. I personally had a uterine polyp removed via hysteroscopy during the years that I struggled with adeno. I highly recommend this article – full of great info!

One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about. So what happens when I know nothing? I research! What is a polyp? A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above). They’re most commonly found in the colon, […]

via Reader’s Choice : Endometrial Polyps — Bloomin’ Uterus

Emotional Aspects

The physical toll of adenomyosis is very clear – severe pain, heavy bleeding, infertility, etc.  This is much easier to see than the emotional toll these women have to face on a daily basis.  The following are some of the issues I was faced with during my 17 year struggle:

1.  Co-workers and friends not supportive due to the fact that the doctors were unable to diagnose the condition.

2.  My own doctors telling me I needed counseling/antidepressants because they were not able to come up with an accurate diagnosis.  I was told that my condition was probably stress related.

3.  Having to struggle with severe abdominal pain and not having an accurate diagnosis – wondering all the time if I had something deadly (such as cancer) and the doctors were missing it.

4.  Being afraid to leave my house for fear that an attack would hit me at anytime.  Being afraid to not have access to a bathroom.

5.  Constantly trying to get people to understand that I was in severe pain.  I could not get them to understand the degree of pain that I was dealing with.

6.  Taking Midol or ibuprofen constantly even when I was feeling good, “just in case” an attack happened.

7.  Going through medical tests to have the doctors tell me that they found nothing – so I still didn’t have an answer to the cause of my pain.  Knowing that I was going home and nothing was going to change.

As you can see, all of this can severely impact the emotional health of those struggling with adenomyosis.

Since doctors cannot diagnose adenomyosis easily, some of them are likely to tell you that it is stress related and may be quick to try and prescribe an antidepressant.  My suggestion is to get a second opinion….or third or fourth!!

I remember watching Montel Williams one day discuss the problems when getting his correct diagnosis.  It took 9 doctors before finding out that he had multiple sclerosis!!  We now know through the show Mystery Diagnosis that a diagnosis by a doctor can be wrong.  Thank goodness for Discovery Fit and Health and this show for bringing this fact to the forefront!

As far as my experience, I was told that it was “all in my head”.  I was told that I needed to go to counseling for stress management.  I was given a slew of antidepressants over the 17 years that I struggled with this disorder.  Actually I probably did need the antidepressants for the stress I was going through in not getting an accurate diagnosis!!  Everyone who is involved with an individual who is sick and not getting properly diagnosed needs to remember this one vital piece of information:  the person going through it is suffering not only physically probably on a daily basis but also mentally.  Treating a real disorder such as adenomyosis as if it is “in their head” just compounds the mental suffering and leads that person deeper into depression!!

“When you hear hoofbeats, think of horses, not zebras”

This is a popular saying among physicians.  It means that when diagnosing someone, look for the expected and not for the unusual.  This may be true in most cases.  However, there are “zebras” out there!  If someone has been complaining about any kind of problem for an extended period of time and has been tested for the usual disorders with normal results, it is time to look for the zebra!  It certainly should not take 17 years (as in my case).  During my research, I have found that the average time to get a diagnosis of adenomyosis is 9 years.  In my opinion, this is completely unacceptable.  Under no circumstances should a woman have to undergo severe abdominal pain and very heavy bleeding for that period of time.  I’m asking for the medical profession to start looking for those “zebras” sooner than later.

Diagnostic Tests

Currently, the most effective way to get a diagnosis prior to hysterectomy is either transvaginal ultrasound and/or MRI.  In my case, I had many transvaginal ultrasounds, but I never received the diagnosis of adenomyosis prior to hysterectomy; however, that was many years ago and the technology has improved since that time.

The following is a list of the tests that may be necessary as you are worked up to rule out other causes of abdominal pain.  I have been through some of these, and they aren’t nearly as bad as they sound.  I will eventually add descriptions of the procedures and add my own personal details of my experience.  Hopefully most of you will not have to go through all of these, but in case you do, I wanted to give you an idea of what to expect.

Pelvic Exam/Pap Smear

Notes from personal experience:

I have always hated getting a pap smear basically because of the position (legs in stirrups) and the insertion of the speculum (slightly uncomfortable).  The actually swabbing of the cervix is not painful at all.  The good news is that it can be completed very quickly and it is over before you know it.

Abdominal Ultrasound

Notes from personal experience:

This is a very easy and completely painless test.  You will be required to have a full bladder so the technician will be able to get clear pictures of your reproductive organs.  This can be somewhat uncomfortable especially if you drink a lot and have to wait at the office.  If you have been waiting a while and are getting really uncomfortable, don’t hesitate to let the receptionist know that you are there for a pelvic ultrasound and have a full bladder!

Transvaginal Ultrasound

Notes from personal experience:

I have had this test multiple times.  It is not painful and takes only a few minutes to perform. It has been reported that adenomyosis will be picked up using this test in 50-70% of cases; however, adenomyosis was never picked up in my case.

Colonoscopy

Notes from personal experience:

I had my one and only colonoscopy close to 20 years ago, and I’m sure things have changed since then.  However, even 20 years ago, this test was not painful, believe it or not.  The worst part of the whole thing was the prep the night before the exam.  At that time, I had to drink a giant jug of medicine that tasted like salt water – 8 ounces every 20 minutes until it was gone.  The purpose of this drink was to clean out the colon, and it certainly did its job!  I went to the bathroom constantly throughout the night and became very cold.  By morning, I was a little nauseated.  However, once they gave me the sedative, I was completely out of it and the rest was a piece of cake.  I have since learned that they changed the procedure from the drink to taking a pill the night before the test.  That sounds a little bit better!

Hysterosonogram

Notes from personal experience:

Although this test sounds like it might be painful, I experienced no pain whatsoever during the actual exam.  I was pleasantly surprised!  However, about 30 minutes after the test (on my way home in the car), I began to have very bad abdominal cramping and some GI distress.  It lasted for about 30 minutes and then passed.  This apparently isn’t very common, so it could just be my individual case….not sure about that, though.

Endometrial Biopsy

I did not have this test performed during my struggle with adenomyosis.  During my research I have learned that this test may or may not be beneficial in women suffering from this condition.  Since adenomyosis is seen in only sporadic areas of the uterus, luck would play a role in whether the actual biopsy site contained the adenomyosis.  If it happens that the biopsy site did not contain the adenomyosis, a women may be told she doesn’t have it when she actually does.  Keep this in mind if this test comes back negative but you continue to have severe symptoms. It has been reported that this procedure will only pick up about 45% of cases.