Endo in nose?

After my miscarriage in Jan 2015, my endo improved. There were still clots but the pain subsided.

It seems to be only when i am stressed that i feel severe pain now

I have pyloric stenosis shortly after i was born and had an op at 2 months old. It is right under the right hand side of my rib cage and is about 6cm long. I have very rarely had problems with it until recently where it feels likes like a stabbing pain. I went to the doctors and they couldn't feel anything. They said if the pain is still there in a few months then to go back but I am worried that the endo has spread there. What does it feel like when endo spreads to a scar/ scar tissue?

Also 6 months ago I had a hard lump in my left nostril. I thought it was a hard bogey (sorry for TMI there) but nothing can out. Its just behind the ridge inside my nostril so i cant see it. I have tried picking it (sorry for tmi) and no blood or anything. I have started to snore because of it (something i have never done before). The pain comes around my period where it feels like someone has literally punched me straight in my nose. The pain goes all the way through my sinuses and in my head. It seems to be always there for a day or two then then seems to come and go on other days . My nose hasn't changed shape on the outside.

I have also been having lumps come out of my vagina. They look like the type of clots I get when I am on my period but they are white. Again, until a couple of months ago this never happened to me. They dont have a pattern (like when im ovulating etc) and dont hurt

Can endo spread whilst there is not much pain? And if it has spread, does that mean my womb etc is messed up or could it just bypass that and go to other places?

Anyone have any clues to what either of these could be from?

Doctors have never taken me seriously as I am only 22 so am trying to not to go back until i have a bit more info

Emily x

8 Replies

  • Endo can spread through the body via the lymphatic system and as you have lymphatic nodules around your nose and throat, (they are there to deal with bacteria coming in from outside), then it can get there too. Doctors usually dismiss any claims that anything not actually part of the reproductive organs can be anything to do with gynaecological problems, but they are wrong.

    You don't say if you have had any treatment for your endometriosis? Have you had a laparoscopy? Are you on any medication?

    When it gets other places in the abdomen it can congregate in lumps which press on other organs, attach itself to organs or other tissue and stick things together. As it grows on the outside of an organ it can work it's way in too. Imagine it kind of like a mould getting on food and gradually growing along and into it. So it can cause different sorts of pain depending on where it is or what it is doing.

  • Thank you for replying. I was meant to have a laparoscopy 18 months ago but it was cancelled on the day due to sickness. As I am at uni, im trying not to have any ops if poss as i'll fail uni if i do. As i havent had the op they wont give me anything so i am trying options at home such as the endo diet, gentle exercise and other bits. I have been trying to hold the op off but its getting to the stage where i may not be able to do that anymore. I'm just scared i wont be able to have kids :-( i honeslty dont know what i'd do if i was told there was too much damage but i'm also scared to have the op for them to tell me the truth.

    Thanks again for replying xx

  • Hi - you say the lump in your nose is hard. Is it beneath the bulbous part of your nose and if so is it completely independent or does it feel attached to the flexible bony cartilage that that part of the nose is made from.

  • It is stuck to the cartlidge so doesn't move.

  • Hi its attached to the cartlidge xx

  • Then I think it will be cartilage. I have a lump in each of my nostrils in different places. On one side it feels huge as if it protrudes half way across. Or it could be a polyp but that would hang down and be softer I think. Many women get hormonal symptoms around period time due to changes in hormones that can include flu like symptoms, migraines, congested sinuses with inflamed nasal membranes and all sorts of associated face pain and I wonder if you have associated the lumps with this. There is no evidence that endo spreads through the lymphatic system - it is a theory like all the others in relation to the pathogenesis of endo. It would be exceedingly rare to have endo in your nose and probably the first reported case so please, please don't let yourself get worried about this.

    I assume you had surgery as a baby for the pyloric stenosis and this will have healed many years ago. Endo in a scar is assumed to get there at the time of surgery so again this is very unlikely to be the case.

    So do you actually have a confirmed diagnosis of endo and was it done on the basis of symptoms if you haven't yet had a lap? Are you in your last year at uni and where are you in the UK as you choices vary?

  • Well its never been there before so it could be a polyp or it could be endo, i dont know hence why i asked a question. I was told by my gynae that endo can attach to any scar... no matter how old which is why i was told to watch out for pain as my scar is unlikely to be disturbed again as it was over 20 years ago i had it op (unless i gain loads of weight). My mum's friend had it confirmed in her nose and had to have it lasered off as it was affecting her breathing, she knew plenty of people who also had it confirmed by a GYNAE. And if you look online, there are plenty of confirmed to have endo in their nose too, and in many places such as their heart and other lungs. I was given a diagnosis based on my symptoms and my many conditions which tend to be found in endo sufferers. My mum also had it as well as my paternal grandmother.

  • It is a fact that scar endometriosis is very rare and is almost always associated with prior gynaecological surgery in adulthood when the person would have already had endo develop. For you to have it inside your scar from surgery as a baby then the tissue would have to have been present from foetal development and then become triggered into endo during adulthood (if that theory is correct). If your consultant is saying that 'new' endo can implant and proliferate on the collagen matrix of such an old scar (that in itself prevents regeneration of new tissue) then he/she should publish a paper reporting such instances that he/she has come upon.

    Similarly extra pelvic endo is also very rare. The only references I can find to nasal endo are in a 2001 French paper that reports a nasal nodule and a 2012 paper where a case was reported in a woman with Behcet's which was thought to be connected. It is unclear why your gynaecologist has not done a biopsy if you have monthly nose bleeds to suggest such a diagnosis.

    Your first degree family history of endo does obviously put you at high risk of having it but for both you and you general gynaecologist to be making such assumptions when you are not even diagnosed is dangerous I think, and other women should be assured that such presentations would be exceedingly rare and they should be aware of the importance of proper diagnosis.

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