My Personal Story

[Samantha]

Thanks for taking a look I do appreciate

Just want to clarify that I demanded exploratory surgery, gallbladder found to have sludge...long story but I respect and very much like this one particular surgeon..

What you have mentioned about endometriosis is something I have actually posted about on here previously (I'll look for the thread later and post it here) asking if anyone out there had endometriosis outside of the pelvis area, ribs, abdominal area as my thoughts exactly what you have just written. My pelvis is crystal clear according to last laparoscopy, no sign of endo what soever..

The pain does get worse with cycles, but no pain in the pelvis at all (just normal period pain now nothing serious) but my rib cage is much worse and it's at 9/10 anyway so you can imagine how much it hurts around period time

I need to find someone who has experienced endo in just these areas so I can gain some insight and perhaps find another gyno who believes that endo can develop in these areas only. I know in general in can grow in lots of areas but always present in the pelvis to start with...I need to find literature that shows endo only found in these other areas and what treatment options available and who do I actually see about this theory..

Thanks again Kathy you've just confirmed something I've thought for a long while

If this was just normal pain I would not be chasing so hard, in cases like mine you have to trust your gut instinct that something is not right.. I know this frustrates some but if you lived in my body you would have a better understanding.
I don't mean to be offensive hear just trying to express the best I can..
I can live with gallbladder pain, endo, fibromyalgia, IBS, migraines, tooth ache, broken leg etc etc but this is very very different   just very hard to explain excatly what I go through


 
Sammy



 

[XIII]

Sammy,
 I am sorry that you got the impression that I was trying to make light of your pain.  That was most certainly not the intention.  It is just that I have seen many patients whose diagnoses have been very complex, suffer the awful consequences of  inapropriate medical intervention. It comes with the territory of having an undiagnosed illness I'm afraid. I have seen patients end up with more problems than they started with! I am just asking you to ask lots of questions and be extra vigilant.
Endometriosis is a highly complex disease. I was once told by an eminent gynaecologist that some of the worst forms of the disease were virtually invisible to the naked eye and sometimes the disease had to become very advanced before it was visible. I can also tell you that even the specialists are mystified by the disease. It is most probably an auto immune condition just like RA. I read somewhere that it is oestrogen dependent and it has been seen in a male who was taking oestrogen supplimentation. I do not understand the mechanism because a male doesn't have a uterus and therefore has no endometrial tissue. I know that it occurs mainly in females at a mean age of 35 and in its thoracic form usually affects the right side. I also know that it can affect the skin and presents as swelling with firm painful nodules.  Does that sound familiar? Thoracic endo is extremely rare so few doctors will have seen it. If the endo starts to attack the lung then shortness of breath and coughing up blood may start to occur. Sometimes the lung will collapse. It is notoriously hard to diagnose. It has often been mistaken for cancer of the lung.
Just a few more things to think about........


   Kathy.

[Samantha]

Your posts are making alot of sense...
I do have the swelling with firm painful nodules, which must (my theory) interfere with the bowel, bowel becomes annoyed/inflamed hence the pressure and tenderness of the rib. The rib is that sore I can't touch it, certain areas feel like they are hitting nerves, there are nodules all over and if touched can have me crippled over in pain. Any yes definitely worse leading up to a period. I also often describe my stomach as extra thick, when you crap hold of some of it it feels thick with nodules........

You've given me more things to think about and I know your not trying to make light of my situation I complete understand what your saying. 

The surgeon who did my gallbladder said the same thing as you, more medical intervention can do more harm then good, at one stage he even called me at home to advise against a particular specialist (2 actually) the term used by him "extravaganza" after money and the end result would not be worth it. Despite this I went through with the operation and in the end he was completely right, waste of time and a few thousand dollars, but I was desperate.

Thanks again Kathy you sure have given some fresh insight and it's good to know my theories are perhaps possible 
 
Sammy

   

[Samantha]

Forgot to mention I do have shortness of breath on ocassions but I'm a smoker and put it down to that. A terrible habbit I'm hoping to kick this year.

[XIII]

Morning Sammy,
I found this abstract. The important aspect here is that thoracic endometriosis can exist in the ABSENCE of pelvic endometriosis.

Abstract:

A 44-year-old female presented with a history of recurrent right-sided pneumothoraces, uterine fibroids, and a palpable lump in her navel. Total abdominal hysterectomy with bilateral salpingo-oophorectomy (TAH-BSO) and resection of the umbilical nodule was performed. Intraoperative inspection of the right hemidiaphragm revealed adherent brownish-blue nodules without any associated diaphragmatic defects and a similar-appearing nodule at the umbilicus. She had no symptoms of pelvic endometriosis, nor did surgical exploration reveal any. Her postoperative course was uneventful and she denied recurrent pneumothorax at 12-month followup. Recurrent pneumothoraces in women of a reproductive age should raise the suspicion of thoracic endometriosis. Failure to establish the diagnosis prevents appropriate curative interventions.

Key Points

* The diagnosis of thoracic endometriosis is often delayed because of lack of awareness of the disorder and failure to recognize the temporal relationship of signs and symptoms with menses.

* Typically, but not universally, thoracic endometriosis occurs in association with pelvic endometriosis.

* Total abdominal hysterectomy with bilateral salpingo-oophorectomy is generally curative for thoracic manifestations of endometriosis.



I suggest that you keep a detailed diary and you make detailed observation of your symptoms with regard to your periods. Please remember that all this could be a complete red herring so keep an open mind.
If there is a really well proven link between your pain and fluctuation of hormones I think that we may be on to something. 
I still think that a trial of a drug like Danozol might give you pain relief and this would add weight to the endometriosis theories. You could be very oestrogen dominant and this drug lowers both oestrogen and progesterone putting the disease into remission. Only your gynaecologist could institute this type of treatment.


 

Kathy.

[Samantha]

While it gives me a little hope I've already had an MRI of the chest and lung X-Ray which came back normal....
Yet on the other hand some say endo does not show on tests, only surgery will diagnose so I guess if I can maybe find a doctor who will trial medication to see if I have any benefits. Previous scans in my case didn't show the endometriosis, only Laparoscopy picked it up.

I've heard many cases of women who have endometriosis yet during pregnancy the pain and symptoms disappear (for the duration of the pregnancy due to hormones) so I guess when the time comes for me to have children if I do have thoracic endometriosis maybe the pain and symptoms will disappear while pregnant, which would support my theory.......

I see my GP in a few weeks so I'm going to print some literature and see what he thinks

Your a Gem Kathy thank you
 
Sammy