Lung & Diaphragm Endo

[tracey1969]

Hi I'm 47 and was diagnosed with pelvic endo 7 yrs ago when I had a hysterectomy for constant bleeding and pelvic pain. All I was told was that everything was stuck down so the took it all. I since found out that pockets of endo were left behind. I have been on HRT since.

Around 4 yrs ago I started having sharp stabbing pains in my left side, which got worse over the years. My GP said it was IBS, I have since had x-rays, blood tests, colonoscopy, gastroscopy all have been clear. I also had a CT scan this year which showed a 5mm nodule in the middle of my right lung. I have also been diagnosed with asthma due to a persistent cough, fibromyalgia due to chronic pain all down my left side.

My GP wouldn't listen to me when I kept saying I thought it was the endo as the pain wasn't in my pelvic area and I had had a hysterectomy. I found a chat group on Facebook with a Dr's factsheet to theocratic endo and printed it off and showed it to them. I am now on a waiting list to be seen by a gyne endo specialist.

Last week end was the worst pain I have had so far, I lost 7lb due to nausea & diarrhoea, hot flushes and chronic fatigue. I am still feeling washed out.

I have read a lot about endo when still having a menstrual cycle but not a lot out there for woman who don't.

I know there are others in the UK how have been diagnosed with Catamenial Pneumothorax and would like to find out more.

[tracey1969]

Hi Lindle thank you for replying.

I live in Cardiff. My HRT is called Kliovance a combined estradiol and norethisterone 1mg/0.5mg.

I don't have anything from my operation and don't know what my oestrogen levels are or what they have been. After my operation I was seen by the consultant twice for HRT and that was that. I haven't seen anyone since. Yes the cervix was removed along with ovaries and womb.

I believe my symptoms are that of catamenial hemothorax catamenial hemopnuemthorax although undiagnosed as of yet. I was keeping a diary but stopped. Have started again as seen to be worse monthly, although the pain is constant now but manageable. It feels like someone hat a voodoo doll of me and keeps stabbing me. Also get the popping sensation when I breath and lying on my left sidd. I have also experienced pain when waking like my ribs are being crushed and it hurts to breath.

[tracey1969]

I was put on it because of the endo, it is suppose to stop it from growing. Also advised I would be on it longer than 5 years as I was only 40 having the hysterectomy.

I know from having fertility treatment I produce to much testosterone, I also have body hair around my belly button and my chest.

No waiting to be seen by NHS.

[Marcia71]

Hi Tracey

Like you I had total hysterectomy and BSO and was put on HRT as only 43 but then endo came back so had a further lap to remove. Continued on HRT but was changed from combined (progesterone and oestrogen) to just oestrogen. Now seen a BSGE gynae who specialises in HRT/menopause as well as endo and she said had to be combined as we don't have ovaries it's needed to make sure we don't get too much ostregon which will definitely make endo grow back.

As it seemed mine grew on either she advised stopping for a while and seeing what happens she's hoping endo will die off as not being fed and pain will therefore reduce and if not then she do another lap to remove

Coming straight off HRT wasn't fun as I'm suffering with hot flushes but I'd rather try not to feed endo and see if that helps as I'm back to see her in a few weeks it seemed a good thing to try

If your gynae knows endo and HRT then see what they think having been on HRT for a while i should think you've had all the benefits you will get so perhaps it is time to come off it

We seem to be the unlucky few that prove endo can continue to grow after hysterectomy and ovaries removed!!

Good luck

[tracey1969 in reply to Marcia71]

Hi Marcia,

Thank you for your reply. My GP wanted to take me off HRT last year but I said no because of the endo. My dosage was reduced several years ago as my bombs were so sore.

I have just been prescribed Gabapentin for hot flushes which seems to be working. Would like something to manage the pain now and that won't make me drowsy so I can still go to work.

I hope all goes well at your next appointment.