Thoracic endometriosis

[Endomy]

I was diagnosed as thoracic endometriosis 1year ago after having my right lung collapsed and I got minimal effusion on the other side, too. I got tension pneumothorax, I had thoracic surgery on right side to re-expand my lungs,. I have been now for one year on decapeptyl injection to induce amenorrhea. I am experiencing some side effects ,and I am totally lost now; as I know I cannot continue on that treatment for ever.what are my options??, any other treatment lines?? By the way, I am 35years old now and have no kids. I really do not want to bleed again in my chest. Also, I need recommendations as regard health centers that can provide help in cases like mine in UK

[Maxi72]

Hi there! You must have had a really tough time of it. I can only imagine how difficult it was to reach your diagnosis. I have endo in an unusual place too ( a plexus of nerves) which has been not only difficult to diagnose but also difficult to treat. So far scans have not detected it but surgery has, although it was not possible to access it all surgically as I suspect in your case. I am 43 and have no children and have been on Decapeptyl/Prostap (and soon to try Zoladex) with add back HRT for over a year. I’m under a specialist centre and my consultant currently seems happy to continue with injections (I’m better on them than off although their positive effects are reducing) rather than a hysterectomy (no guarantee that I’ll feel better after, given where the endo is). He has other patients who have been on injections for as long as 12 years with HRT. Although they’re not licensed for use beyond 6 months, this just means that you could not sue the drug company in the event of a related side effect but you could sue the consultant ( as he put it). Therefore as long as you’re having periodic bone scans and on HRT, in theory you can safely continue. Although I realise your situation may change should you wish to have children.

In my experience, no GP centres or even Gynae hospital clinics ‘get it’. I only feel like I don’t have to explain myself at the specialist centre- I hope you are seen at one? I am in the process of trying to arrange for the injections at my GP since I have a very long drive every 3 weeks currently and I can’t envisage this for the next 20 years! I live in fear of losing motor nerve function again ( as happened 3 years ago) and am sure you live in fear with your lung experience- therefore I’m happier to continue with the injections as I feel I don’t have much choice and have just about got my head around that.

Hope my long message is of some help to you. 🙂

[Endomy in reply to Maxi72]

Thank you so much, Maxi72

I am so grateful for you for sharing your experience with me.I feel pain in your words and I can really understand what you have been through. I am delighted that some people can go on decapeptyl for as long as 12years. But can I ask you what are HRT you are on? As this has been a point of debate between my consultants. My original surgeon, who did laparoscopic surgery for me is claiming that it would antagonize the drug effect. Other consultant is strongly advocating HRT, so I would like to ask you what are their type? Yasmin tablets or other combined oral contraceptives? Should they be taken on continuous basis? And do patients like us take full tablets or half dosage ?! I am really confused and up till now, my original consultants is refuting that option!!

Thank you again for your help and support and I hope you concur your endometriosis❤❤❤

[Maxi72 in reply to Endomy]

Hi! Thanks for your kind words. Initially I was on Kliovance as HRT which is a low dose but I felt too tired and had a fainting episode which I related to my hormone level being too low as it was better as the injection wore off. I was then changed to Kliofem which is double the dose of Kliovance and it seems to agree with me. I think that long term injections are only possible if you are taking something to combat the bone thinning effects I.e. HRT. Perhaps they want to see how you are first without and try to get your endo to a better state in the lung. I cannot imagine that you could continue without HRT long term though.

Please feel free to ask me anything. I have a consultant appt next week so maybe able to ask something in your behalf. You didn’t say if you’re under a specialist centre?

[Endomy in reply to Maxi72]

Hi Maxi72, thank you again for your rapid response and caring words. Actually, I am not under the care of specialist centre right now. I am originally from Egypt and I lived for a while in Ireland, so I had been diagnosed in Ireland and the consultant who did laparoscopic surgery for me is in Ireland, the others who are advocating HRT are in Egypt. I am planning to be in London next October, so I am planning to search for specialist centre to seek medical advice, because my condition is so rare and I haven't been even correctly diagnosed in Egypt. I don't know if this is possible, because I am not a native. So, if you have contact details for a good specialist centre in London, that would help me a lot. Up till now, I feel so lonely and lost, whenever I tell my condition to even gynecology specialists, they just wonder and say we have heard nothing like this before. I just need someplace, where my condition is not an enigma. Thank you again for your support..

[Chezzerl]

Hi Sorry to hear what a rough time you have had xxx hope things continue to improve for you x would you mind me asking what your symptoms were leading up to your lung collapse ? I was diagnosed with Endo in January this year and am awaiting excision surgery for recovaginal and uterosacral endo in August, but been getting increasing pains in my ribs spreading round to my chest particularly at night easing a bit during the day , also get pain in my spine and pins & needles down my arms. How did they diagnose yours in the thoracic area plz ? I’ve had a decaptyl injection 6 weeks ago but not had too many side effects other than some hot flushes and bit irritable 😠 not sure if I will be given more after my surgery x hope things improve for you x

[Endomy in reply to Chezzerl]

Hi Chezzerl, As regard my symptoms, I had pain in the chest along my lower ribs but only on last two days of my periods, I had also cough, I was diagnosed as thoracic endometriosis because I had severe respiratory distress after I travelled by plane. But my chest pains were not continuous allover the month. It was relieved a lot after I had decapeptyl and no periods. I hope you are not thoracic endometriosis and I hope you get much better and concur your endometriosis❤❤❤