Breathing problems and family issues

Hi, I'm 34 and have had endo symptoms since I was 19, I was diagnosed with stage one endo in the pelvic region via laparoscopy when I was 25, also had a 14cm ovarian cyst removed and they lasered the endo out it came back in a month. Had an awful time getting diagnosed, I know that is the usual story so no shock there. But I have also been clinically diagnosed with diaphragmatic and thoracic endo. My mum had diaphragmatic endo too. This was also clinically diagnosed. My question is, does anyone else have or suspects they have diaphragmatic or thoracic endo? Because I feel so alone, I don't know anyone else with endo in these locations. The thoracic endo causes me problems with my breathing and as the years are passing fragrances, and scents are aggravating the symptoms and restricting my breathing. But my sister says my breathing problems are in my head, despite being clinically diagnosed by going on zoladex and experiencing the pseudo menopause, which was awful! I am desperate to find other women who have breathing problems and who are also affected by fragrances and scents. All perfumes affect me, but only some scents do while others don't, I don't understand this myself. But does endo ever make sense!

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  • I worried myself silly for over a year with breathing issues. I have now been diagnosed as having asthma and have been so much better since receiving treatment. Talk to your doctor as it saves all the worry :)

  • Thanks for your reply, been checked for asthma and it's not that. But thanks anyway x

  • I find myself very sensitive to some perfumes/scents .. Not sure if its down to endo but they also make me feel sick and give me violent headaches .. Davidoff Cool Waters is the worst .. UGH. Im asthmatic and been suffering from pretty chronic chest infections being diagnosed as pneumonia .. My GP thinks my period completely kills my immune system .. Another thing im having investigated are my bowels .. Im chronically constipated and ive been told my bowels are inflamed .. Anyway when im seriously backed up its evident my bowels crush my lungs leading to breathlessness! Im telling you this because theres millions of things could be causing your breathlessness .. Could be asthma/allergies/mechanical ... Id speak to your dr!

  • Thank you, I hope you can find some help. x

  • I've had breathing problems too, also a pain and bubbling feeling around where my diaphragm is. I've seen a chest specialist and I've seen the endo specialist. No-one wants to know. The endo specialist says it would have been seen when they did the lap and as I has a hysterectomy I can't possibly have endo any more. The chest specialist has suggested breathing exercises, it definitely isn't asthma as I've been tested for that.

    Can you tell me what they did to diagnose it?

    However, it has been getting better since I came of HRT so I'm just hoping that it will clear up itself.

    As for scents, I found out long ago that I am hypersensitive to saccharin. I'm not sure if this is connected to endo at all. This means the cheaper scents make me choke, it is sort of like inhaling smoke. You'll find any cheaper sweet smelling scents have saccharin.

  • Hi, your endo specialist sounds useless. Everyone knows lots of women who have hysterectomy and have the endo removed can still suffer the pain and symptoms of endo, it's one of the great mysteries of endo. I would suggest you research on American endo specialist websites, they know so much more. Also from my research I know that a lot of women with diaphragmatic endo have it behind the liver on the diaphragm which surgeons cannot see unless they move the liver especially to look. My endo specialist said a gynae can not do this without a thoracic surgeon present. So if you didn't have a thoracic surgeon there especially to look behind the liver that could explain why they didn't see any endo on your diaphragm. I was put on the zoladex injections which put you into the pseudo menopause. So when my symptoms associated with pelvic, diaphragmatic and thoracic endo disappeared whilst in the pseudo menopause and then reappeared when I came out of it that is how they clinically diagnose it. However, I would NOT recommend zoladex it caused a lot of other problems for me and I highly regret it. The other thing I did was go on a wheat/choc/alcohol/dairy free diet and that reduced the pain and symptoms of the pelvic and diaphragmatic endo and also the thoracic symptoms so it all points to thoracic endo, as well as just knowing your body and when the symptoms come (basically at the same time other endo/hormonal symptoms are bad).

    However, the only thing they can do is try and remove the diaphragmatic endo or pain killers since you have already had the hysterectomy. My endo specialist said they wouldn't touch my lung because it is too dangerous. Again I think my specialist is behind the times because on an American forum I seen women talking about a thoracoscopy which I have never heard of before but it is how they can look into the lungs to find endo. But it's risk and reward I guess. What is worse, going on stronger pain killers or risking surgery. Nightmare. I'm on gabapentin btw it's the only pain killer I found that helped the endo pain. And I subsidise it with co-dydramol when the pain is horrendous (that's an opiod). If you aren't getting enough help with pain med, get your gp to refer you to the pain clinic, they are the experts and they helped me find the right pain killers.

    Thanks for telling me about saccharin, I'll look into that. Wishing you all the best.x

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