Lung & Diaphragm Endo

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.

6 Replies

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  • Hi

    Unfortunately if endo is present at the time of hysterectomy (and presumably BSO?) and it is not removed then it can continue to progress under the influence of HRT in much the same way as if the ovaries were still there. It can also feed itself by producing its own oestrogen. Look at my post on oestrogen production. What is critical is what your oestradiol levels have been throughout the 7 years on HRT so what level has it being running at and what type and dose of oestradiol is it you are on?

    Your may have rectovaginal endo that is located behind the cervix. Did you retain the cervix? This would explain your IBS symptoms. This won't have shown on any of the tests you mention. Have a look at my posts on RV endo and endo on the uterosacral ligaments to see if you identify with it.

    Are you experiencing the symptoms of Catamenial Pneumothorax - sudden sharp pains, pain when breathing in and breathlessness and is it definitely cyclical? This is very hard to treat and there will be only one or two surgeons in the UK who would operate. In pre-menopausal women treatment would usually be by hormone suppression (medication such as GnRH agonists - prostap, zoladex etc.) so for you the same effect would be gained from stopping HRT, which you would have to do anyway by age 51.

    We could do with the operative report from your hysterectomy/BSO to see what the gynaecologist's interpretation was of what he/she found in your pelvis. The histology would be useful too to see if any disease was found on your ovaries. Do you have these? If not I should get copies of what was sent to your GP.

    Is the specialist you are being sent to at an BSGE accredited endo centre? Where are you in the UK?

  • 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.

  • Do you know why they are giving you progesterone as this is not usually recommended after hysterectomy as combined HRT carries a (slight) risk of breast cancer? The inclusion of progesterone is to protect the uterus lining from cancer but you don't have one. It is only recommended to take HRT for 5 years and the dose should be gradually reduced rather than stopping suddenly. I should say you should be off it by now. I suggest the first thing you do is get an oestradiol blood test done at your GP practice. There is always the possibility of having an ovarian remnant that is still giving you cycles and driving endo. These in themselves are quite rare but in a case of everything being stuck down as you describe it, with scar tissue, then if the ovaries are stuck in all of it then there is a higher risk of ovarian tissue being left.

    Are you waiting to be seen at the Cardiff endo centre?

    Can you get back with the reports and blood test result.

  • 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.

  • 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

  • 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.

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