25 years old, catamenial pneumothoraces, possible endo, please help

Hello all,


I've been reading posts here for about a day and thought I would post because I am so distraught about my situation, I've been on the verge of tears all day and finally just let go.

I've had multiple spontaneous pneumothoraces.

1st in 2000 on my left lung, chest tubes and I was fine
2nd two months later february 2001, chest tubes did not help, i had it during my period and I needed a VATS pleurodesis, I was 14 at the time so I had no idea if they found endo anywhere or anything, all I wanted to do was go back to school!

3rd was a small one on the left side in 2005 I was admitted to ER but left the same day, was not admitted, it was small and they said it would reabsorb itself.

Now I'm a nurse and am pretty well-educated when it comes to healthcare. Although out of the three times I had it, only once (that I can remember) occurred during my period. Now just this past week - 2012 I had another pneumo on my left lung, it was very small and I was monitored in the hospital for a day, it was two days before my period. I've been home since, its been three days and things were getting better until this morning. I woke up with more chest pain but nothing worse than what I had started with, but my period was really flowing and it was a heavy day.

I've connected the pneumothoraces with possible endo because I do think I have catamenial pneumothoraces, this is 2 occurrences now that coincide with menses.

At this point, I'm freaking out about possible endo on my lung. I don't have any pelvic symptoms at all and my periods only last about 3 days, only heavy and painful on one day and that isn't overly painful. Still, I believe I could have endometriosis of my lung, just not my uterus, although it is rare.

I'm thinking since I'm fairly young and I want to conceive, at this point it would be best to start birth control pills to keep my hormones at bay and prevent the endo tissue from growing, I believe I should try to conceive when I am ready maybe 3-4 years from now. I'm hoping the pills would also in turn help from getting collapsed lung.

I'm just worried about the possibilities of future VATs procedures to visualize the pleura and diaphragm and finding endo, what stage it could be, how bad it could be, and the possibility of needing a hysterectomy in my 20s prior to having children. All these thoughts are rushing through my head, will I have to harvest my eggs and save them and think surrogacy?

I know, i know, I'm getting way ahead of myself but I would really like to figure it all out before it is too late. Sometimes we have to diagnose ourselves!

I was hoping to connect with anyone who has been through this, catamenial pneumothoraces or not, false scares, having endo on the lung, collapsed lung, being my age and with my concerns regarding wanting to conceive and wanting a family, issues with pregnancy or non-issues (i hope!), happy stories (i hope!), anything!

If anyone could share their personal experiences with me, it would definitely help me navigate my own. I may not even have catamenial pneumothorax or endo, it MAY be a coincidence, however, I personally don't believe that catamenial pneumothorax is rare, I just think it is underdiagnosed as spontaneous pneumothorax and than isn't found till much later when women begin having problems with infertility or pelvic pain.

I'd much rather deal with this at an earlier stage.

Any help would be greatly appreciated, after reading through many posts, I'm so glad I found this forum, the support seems endless.

Thanks for reading!

I don't have catamenial pneumothoraces, but let me see if I can still help you a bit!

I did have my hysterectomy for stage IV endometriosis at the age of 25, so I do have an idea of part of where you are. However, I was married with two sons so my life situation was a bit different. My local OB/GYN does feel that my use of birth control are part of the reason I was able to have my two sons so bcp is definitely something to consider for attempting to keep any current endometriosis at bay.

However, I would strongly encourage you to locate a doctor who specializes in treating endometriosis to be sure you use the most effective treatment option for you in order to maintain your fertility. At this point, I would not rely on a general OB/GYN. It is possible you need to undergo surgery to determine if there is already extensive pelvic endometriosis that needs dealt with now to allow you to conceive later. Remember, not all endometriosis is symptomatic so though you are basically symptom free--as I was--you could still have pelvic endometriosis.

You should also be finding an exceptional specialist to help treat the catamenial pneumothorax as you may need to have the endometriosis affecting the lung surgically removed to offer the most optimal long term outcome.

There are a couple websites dedicated to catamenial-pneumothorax and endometriosis that you might want to check out if you haven't found them already: catamenial-pneumothorax.com and catamenialpneumothorax.org. You may also want to do a search for "catamenial" here to read some of the threads on the site, though most don't contain extensive information.

These articles by endometriosis specialists might also be helpful:
http://www.vitalhealth.com/patient-p...-the-lungs.php

http://laparoscopy.blogs.com/prevent...metriosis.html

And you are right, they are finding that this condition is likely not as rare as once thought, it was simply under-diagnosed: http://www.ncbi.nlm.nih.gov/pubmed/20473170

in there and know that you are not alone!

How did you find out you had stg IV endo if you didn't have any symptoms? Just wondering thank you

I started bleeding extensively soon after moving to a different state. Going without and changing birth control pills over an almost two year time period didn't get my cycle back on track. My GP referred me to an OB/GYN and he did a hysteroscopy, D&C, and endometriosis. That is when the endometriosis was discovered and when my OB/GYN told me I should not have been able to have children.

Looking back, I did have right sided "sensation" most of my menstruating years, even on bcp, but I didn't have cramps or anything. I started bcp when I was 16 as I was getting married and my periods were very long and heavy which. But long heavy periods were pretty normal for my family and even my best friend, and none of them have endometriosis. I also had diarrhea issues with my period, but, again, so do others I know and they do not have endometriosis.

The interesting thing for me is that I did end up with endometriosis pain AFTER my hysterectomy, relating to the endometriosis my OB/GYN could not remove. Go figure! Seven years after my hysterectomy I had excision surgery with an endometriosis specialist and I have been endometriosis pain and symptom free since.

Thanks so much for telling me your story!

I was diagnosed with Catamenial Pneumothorax aka CPT... My right lung collapsed every month right before and during my cycle, I even managed to make it through one cycle only to collapse the day after.. In my case I had 19 collapses before I finally had one where I couldn't breath, thats when I had to have my first chest tube then a week later mechanical plurodesis... I went to a lung specialist after my very first collapse then was referred to a surgeon.. The surgeon and I decided my body was handling the collapsed good so we just documented each month.. Also was told if I ever had to have a chest tube it would be wise just to have the vats surgery.. That is exactly what I did.... I asked the surgeon to please pay close attention to my diaphragm as I read so much on endo and holes in this area.. During surgery my lung looked really good , no scarring from all the collapses no blebs and no endo.. He then moved to my diaphragm and thats where he found the holes/endo unless those holes were repaired I would continue to have collapses...

sorry thought it was getting to long....

I had and still do work with a lung doc and a gyn... I was given a depo shot before being discharged after my lung surgery...this stopped my cycle for about 6 or 7 wks. I thought I was in the clear only to start bleeding none stop and heavier then ever. It was miserable and I was so afraid of My lung would collapse again... I made the decision with my Doctors to have a total hysterectomy only because I am 43 and already had my beautiful boys did I even consider a hyster.... There are other ways to stop the cycle which cause the collapse......

Hope this helps some

Shari

Thanks Shari!

WOW, 19 times! That is unreal! I'm so happy you are feeling better now. How did you know that you had pneumothoraces? Just that obvious feeling and pain I'm assuming?

I'm quite familiar with the pain of a pneumo so I'd also be able to recognize it if it were to happen again and again. I'm definitely going to see an endometriosis specialist and I believe I should go on birth control.

I'm not sure if I even have catamenial pneumothorax, because although I have had 2 occurrences, I don't have a collapsed lung with every cycle, I'm not sure how often it needs to happen for it to be considered catamenial, or maybe it has to do with the growth of the endo, maybe it could get worse in the future.

Thanks so much for your insight!

When I had my first pneumo, I was just going to the Dr for a check up, I was having some pain in my right upper back area, I thought I might have pneumonia so they did an x-ray and said it was plurasie (SP) then as I was walking out the door the radiologist called the dr and said he found a 25% collapse and that is when my nightmare started...I went to a lung specialist within days of the findings..He said it may be spontaneous and never happen again.. I had 3 more collapses then realized there was a pattern with my cycle and lung collapse... I went back to my Dr and told him about this and he said said Yep there is a name for that and I then learned about CPT... Funny how he had never mentioned it to me before....I was told I have CPT depending on which Dr you asked at the time... We were all pretty sure I did but it wasn't until my lung surgery that I was officially diagnosed.... They biopsied some damaged tissue from my diaphragm and found it to be endometriosis... Then 3 months later when I had my hysterectomy they found more endo in my pelvic....
CPT isn't a rare disease anymore there are so many women with it.