Is this endo? So desperate for an answer!

Hi there, I found this site after my mum mentioned endo to me and I need some help please!!

In early 2010 I started to get a sharp stitch pain in my lower right abdomen the first few days before and of my period. then one day it came on full force everyday. I went to the doctors every other day and was told it was nothing, even told that it was because I'm a single parent!! I fought all I could until I was rushed to hospital in OCT 2011. I had a lap, performed by a bowel surgeon I think. They only found a small cyst and a few adhesions, mainly from my bowel to c-sec scar I think.

I thought I was fixed!! I was pain free, until my period came and it was back. At first just before my periods now it's pretty constant. I have been to see gyne, the bowel surgeon and pain management, none of whom can tell me what is happening!

I was on marvellon for 3 months without a break and it did help, but my doctor stopped it. I tried 6months of zoladex injections, that helped the pain, but the side effects were far worse leaving me with lasting severe asthma. So that was stopped.

Now I am on: fentanyl patch, citalopram, mirtazipine and gabapentin.

I went to see the nurse practitioner the other day because for my last 2 periods since the zoladex, I have not been able to wear a tampon. It doubles the pain and it is excruciating. That's not right.

The nurse was nice and softly spoken but actually told me the pain is all in my head, it's all because of my depression and anxiety (which got much worse after my lap) she said I should think positive and push past the pain, now I'm a half full kinda girl but this pain would test the patience of a saint!

Since then I have noticed that my cervix is severely tilted again, much worse than before when my lap fixed it.

After seeing the nurse my mum happened to ring me and she had seen something about endo on this morning, and said it sounded like me. I have always had heavy and painful periods, I also have a history of reoccurring urine infections, abnormal smears as blood in my stools. Also both of my babies were prem due to complications on my side.

So that's what's led me here.

I have an appt with my gp on the 27th, i aim to go armed with info and ready to change doctors if he won't do anything.

So, sorry about the essay! My questions are: does this sound like endo to you? Any advice for the pain/medication? And also any help on changing an ignorant male doctors opinion? Or is this all in my head? Should I be asking for mental Health teams? I don't know how much more I can take, I feel that I am missing so much of my children through the pain and non stop tiredness. Any support would be much appreciated, and thank you ❤️

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  • I was going to swear... but I won't! To me, you sure as anything DON'T need to be asking to see a Mental Health Team. I get UTTERLY SICK TO DEATH of insensitive Doctors and Nurses (and other medical people), so-called "professionals", telling patients that pain, fatigue and other unpleasant symptoms are "all in their head". It's MAJORLY UNPROFESSIONAL, and DISGUSTINGLY INSENSITIVE! How I wish that THEY could be put in YOUR (or MY) position and told EVERYTHING is in THEIR head!

    Right... "rant" over! I should be trying to help you...

    Personally, what I think you are experiencing is PREJUDICE, plain and simple. Because you have admitted to having depression/anxiety, medical people that you come into contact with are ignorantly and lazily putting ALL your symptoms down to that. It is VERY easy to say something is "in your head", especially because you admit to having some issues with depression/anxiety, so as far as the Doctors and Nurses treating you are concerned, you "have admitted" to "things in your head". Besides, if, as they say, all your symptoms ARE "in your head", that generally means they do little to investigate them PHYSICALLY - so that could actually SAVE TIME and MONEY for THEM! It's a disgusting, lazy way of treating you, and personally, this sort of thing makes me TRULY ANNOYED!

    NOBODY has the right to assume that people who have emotional, cognitive or mental dysfunction DO NOT also suffer PHYSICAL ILLNESSES with PHYSICAL SYMPTOMS. A person can have SCHIZOPHRENIA, and still have DIABETES, or MEASLES, or GASTRIC FLU! Even people with mental health issues are perfectly capable of experiencing physical illness - THEIR symptoms are just as real as anyone else's and are NOT "in the head". Like I said, an attitude that treats people with a history of mental health issues as less important, or less believable than other patients is PURE PREJUDICE. Its DISGUSTS me to see this in the NHS!

    YOU have what would seem to be very genuine symptoms, that could well indicate Endometriosis. Endo IS, admittedly, somewhat of a confusing disease, and is hard to diagnose. Many medical practitioners really do NOT seem to know enough about Endo, and thus they fail to consider it as a possibility. Besides, Endo can cause some symptoms that are very similar to those of many other illnesses (e.g. IBS or Cystitis) and many Doctors spend ages confusing Endo with other illnesses, telling patients that they have this, that and the other - only to find, in the end, it is actually Endo! On average, it still takes @ 7 years for a women to get an accurate diagnosis of Endo, and this has a lot to do with general ignorance about the condition. There are lots of "Endo myths" floating about, and even medical people can fall prey to these - things such as "you are too young to have Endo", or "Endo is cured by pregnancy". NOT true!

    For more info on Endo symptoms, according to where the Endo is located, see...

    endo-resolved.com/symptoms....

    For more info on Endo myths and facts, see...

    endometriosis.org/resources/articles/myths/

    endometriosis.org/resources/articles/facts-about-endometriosis/

    Your mum has done right by pointing you in the direction of information and support that may offer suggestions as to what is behind your symptoms. Good woman! You need to hold onto a source of support like that, especially as many women struggle to explain Endo to family and friends - it sounds like your mum is already pretty "clued up"!

    You say you have already had a lap, that found small cysts, and what looked like adhesions. Again, this sort of thing is very common in Endo sufferers (who regularly have cysts and adhesions). Were you ever told exactly what had lead to the cysts and adhesions? I mean, people do NOT just normally have them, so they MUST have been caused by something!

    Let's be blunt (hope you don't mind). Cysts, adhesions, painful periods, pain inserting Tampons, premature births due to complications - these things are NOT "normal". They are things that you are utterly right to be concerned about. You are NOT worrying needlessly, and this is NOT just a symptom of depression/anxiety - so DON'T allow anyone to kid you it is. Pain, cysts, adhesions and complications during pregnancy/giving birth are all the result of SOMETHING. The question is whether it is Endo.

    I would strongly advise that you DO exactly as you suggest, and arm yourself with information prior to your next appointment. There are many Gynae conditions that may cause symptoms like yours - for example Endo, Adenomyosis, Polycystic Ovaries, Pelvic Inflammatory Disease - when a women has symptoms affecting her abdominal and pelvic area, as well as her menstrual cycle, common sense would suggest that Doctors consider the possibility of a Gynae disorder!

    I can identify with a little of what you are going through. I have Endo, that took YEARS to diagnose (9 from when I first recognised obvious Gynae symptoms, or 28 from when I first had teenage problems with my periods!). My G.P. was totally unhelpful, and actually extremely rude. My Gynaecologist was insensitive and incompetent. BOTH insisted for ages that symptoms were "in my head", and that my excruciating period pain was just "normal" (implying I was a hypochondriac!). My Gynaecologist even wrote that he felt my inability to conceive (I have fertility problems), plus all my other symptoms, were just due to "anxiety". Believe me - I've met plenty of prejudice, ignorance and laziness in the NHS! Imagine trying to tell a woman that heavy periods, water retention, bloating, pelvic pain, ovulation pain, nausea and diarrhoea during your periods are all caused by "anxiety"! I think I know WHO I'd call MAD, and it WASN'T ME!!

    My best advice is as follows... BELIEVE IN YOURSELF. This is YOUR body and YOU know your symptoms. Prepare for the next appointment by reading up on information, and putting together a list of questions to ask your Doctor(s). Make a list, or keep a diary, of ALL symptoms - to help you spot patterns, and also so you don't forget things if nervous, or pushed for time. Be pushy, and don't accept getting "fobbed off". If you need a little "moral support" see if you can get your mother to go to the appointment with you, to back up what you say. Present your "case" carefully, firmly, and with clear facts. If ANY Doctor or Nurse makes inappropriate or rude comments, writes things like this in your notes, or dismisses you without a proper explanation (fobbing you off) be prepared to make a formal complaint. This sort of attitude and behaviour is totally unacceptable! Organisations such as PALS can help you if you have to complain. See...

    england.nhs.uk/contact-us/c...

    or...

    nhs.uk/chq/Pages/1082.aspx?...

    Above all, ask to be referred to an Endo Specialist. Many basic Gynaecologists are not fully conversant with Endo, and so can miss it, or make errors. To find an accredited Endo Specialist in your area, see...

    www/bsge.org.uk/ec-BSGE-accredited-centres.php

    I am really sorry that this has been such a long reply (boring, I know!). However, I really did want to try to help, and offer as much information as I could. YOU deserve to be listened to, and to receive the help and support you need. The RIGHT help, support and treatment. DON'T give up... go in there, head held high, and state your case. Good luck.

    Wishing you all the best & hope you get the solution you so deserve.

    Take care,

    Elaine. x

  • Heck! Sorry! Typo!

    It should have read...

    bsge.org.uk/ec-BSGE-accredi...

    That's what you get for rushing!

    All the best,

    Elaine. x

  • Thank you so much for the valuable advice- I think I am going to make a formal complaint even if I don't change doctors- I consider myself to fairly strong willed so I dread to think how others have been treated there! I know I've made well over 60 appts about this alone, it's absolutely disgraceful.

    Your links are amazing, and will make a huge difference in the coming weeks, I can't thank you enough!!

    The more I learn about endo the more I feel a strange almost peaceful feeling that I am not alone and I am not as mad a they keep telling me!! My life would make sense everything is starting to make sense now!

    I simply can't believe that doctors and female nurses are so ignorant towards people with this condition, my whole life, like many others has been turned upside down, and I needed a nice kick up the butt to realise I need to take action!

    I might try and get in touch with a specialist to try and get a private diagnosis, will have to look into this more as I could never afford the lap money!!

    Thank you again and best wishes to you xxx

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