I grew up with a Mum suffering from endometriosis. I watched first hand what it did to her. I was told my grandma and great grandma had it. And then as I grew older both my mums sisters got diagnosed with it. I went to my doctor to ask if I could be at risk and he said no as its 'not hereditary'.
I've developed sciatica, nerve damage at the bottom of my spine, leg pain and pelvis pain. I need a walking stick when its bad and my wife has to help me get dressed and into the shower/bath. I've had this for over 7 years and its just been getting worse. I keep getting physio and painkillers to help me sleep. I need to get a smear test done under general anaesthetic as its too painful to get it done normally. Again, the gynaecologist told me 'its not hereditary and women were just diagnosed with that willy nilly back in those days'.
Since then, my mums other sister and one of my mums sisters two daughters have all been diagnosed. They got checked out after they all had their first kid. Im in a same sex marriage so I cant technically wait until I have my first kid to have anything flagged up.
My periods last 4 days and I swear I bleed enough for 10 people. They are painful and I end up in tears and unable to move. Its also painful to have sex. And when I'm led down and try and turn over, it feels like there's something tugging and pulling and its a sharp pain. I also get sharp pain up and down my spine. I'm due for a smear procedure on Friday and just had my pre op. I enquired about whether it would pick up any endo cells and she said no. She then again told me 'its not hereditary so don't worry'. I'm having a private MRI scan done on my back because im sick of being in pain and the physio and GP didn't want to so it because it would cost them money...
I think what I'm trying to say is, why doesn't my doctor/or any health professional seem to want to take me seriously?
Sorry this is long. Alot is going on. And im sick of being in pain
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Tokyomadonna
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sorry to hear your struggling and you must be so worried and confused after seeing what your mum went through.
Could you see another doctor and maybe try a different approach for gynae referral?
Try doing a symptom diary to show doc your symptoms are worse mid cycle and when on period.....also write a list of all your symptoms......something has to be going on especially if you need GA to have a smear.
Unfortunately you have to be extremely persistent with doctors but if you explain the impact it's having on your life Dr should do referral.
Not enough is known about endo and it can be an expensive condition for NHS to deal with which is why Drs delay referrals until it becomes unbearable to deal with.....and really we shouldn't have to wait till it gets like that. You know your own body and how much pain your in so don't let any Dr tell you otherwise until they can prove there's nothing wrong medically
Thank you so much for your comment. I just feel so...lost at the moment. You know when you know somethings wrong with you but the people who need to believe you don't. It took them years to even consider my back pain as an actual condition. I'm going to do a symptom diary! And when/if my smear comes back clean and my MRI doesn't show anything else wrong with my hips, ill take it all to the GP (my mum said she'd come with me) and just persist!
Well there are quite a few people where it runs in family's my aunty has it and my mum seemed to have it but she's unclear as no diagnosis for that she did however have a hysterectomy for excessive bleeding so we just don't know.as far as having kids there's no particular exam done after having kids I have kids but I have endo and no tests were done on me afterwards though if you did get pregnant and the pain diminished this could explain that you have endo.i was like you I could not walk or get people to listen I needed to use a grabber to pick things up and a stick.still no answers on the nhs I went private for diagnosis.im now pregnant pains have diminished if your g.p dosent listen you must at least get a consultation from a specialist to access your symptoms or demand that you think you have it and for investigation sometimes it's the best way for them to listen x
I'm in the UK so I might need to have a research on private endo specialists. I saw the price of a private laproscomy and my jaw nearly hit the floor. I can fund my MRI as I found they are cheap if you just want one area and don't mind waiting a couple of weeks (if I wanted it next day I would be paying £££)
Gynaecologist said to me it can be hereditary, specifically asked if anyone in my family had it. My aunt did, and suspect my mum did, but wasn’t diagnosed, she had a hysterectomy in her late thirties and really bad bowel issues.
I’m fairly sure if you look at the endo UK site there is info about being hereditary. I’ve also met others where mothers and daughters have had it.
Find a specialist, make sure that when you have MRI why you want it.
I’m so sorry you’re dealing with all of this, my heart breaks for you as I’ve been through it. You need to get an appointment with a gynecologist whatever you can do. Instead of the MRI put it towards a private Endo gynecologist consult. I would highly recommend bringing your partner with you to your appointment so they can advocate for you as well. For me this helps to reduce the stress.
Please don’t let this go on too long. I am 36 and was just diagnosed in February with stage 4 recto vaginal endometriosis. I have had painful periods for as long as I can remember. I even remember being a teenager (17 or 18) and when I went to emergency they gave me a pregnancy test and that was it. So I asked my doctor and she said painful periods were normal. And so began the journey of misinformation from doctors. I asked my GP about endometriosis around 6 years ago, this was after a miscarriage and continuously trying for a year to have a baby and not getting pregnant, and she laughed at me and asked what would make you think that. I also at that time was having 7-8 bowel movements a day and on my period every bowel movement I would get a sharp knife hot poker up my rectum (sorry tmi).
My surgery was horrible and hard to recover from, I almost ended up with an colostomy bag. It took 3 hours for them to remove my rectum that was pulled up and over my vagina. Please don’t let it get to where I was. I spent the money and paid to see a private doctor that was then able to refer me to the best Endo clinic in Canada which happens to be msp (our medical standard services) covered.
I also have 16 other chronic conditions including adenomyosis and fibroids. I say this because I have done a ton of research on my conditions and anything along the way I thought might also be going on lol. It definitely sounds like you have Endo from everything you’re saying. My specialist said that adenomyosis is usually what causes the heavy bleeding and endometriosis is what causes severe chronic. The type of pain where no medication takes the edge off. When I was getting a period I would sometimes almost blackout from using the toilet. Also it can 100% be hereditary but it doesn’t have to be!
Everyone hates this suggestion and wants a “natural” way but Endo isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain.
There are a few things you can do for yourself now..
1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.
2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.
3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.
4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.
5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.
6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition. They tend to only do ablation (basically removing them top and leave the root). Instead of the gold standard of excision where they remove the whole implant. I have read so many stories of woman either coming out and they find no Endo or are still in just as much pain.
Sorry about the novel! Please feel free to pm me if you have any questions. You got this! 💕
Oh no don't apologise! This is all helpful to me thank you so much. The MRI is already booked (and only cost £200 so its not too bad...and at least I'll have more evidence of what its not for the GP)
I live in England so I'm having trouble find affordable private specialists. I am starting to keep a diary and when/if my smear and mri come back "clean" my mum said she'd come with me to ask. I just feel like I've been asking for this or even hinting at this from health professionals for years and I've been brushed aside im scared of it happening again
If you are in the UK you might want to refer your GP to the NICE guidelines for the diagnosis and treatment of Endometriosis. These provide a clear process that your GP should follow. As a previous poster has already said, the first line of treatment would be the combined contraceptive pill (which you can take continuously to try to suppress your period) and if this has no effect after a few months then you should be referred to a gynaecologist for further investigations. Given your experience of smear tests, I am surprised you haven't been referred to a gynaecologist already. I would also agree with a previous poster that it would probably be better for you to invest in a private gynaecologist appointment than an MRI.
I was referred to a gynaecologist to have a "chat" about it and she was the one who dismissed me and literally told my mum "yea we used to diagnosed it as that without any real cause so your family might not actually have it". I had her again this time, and she would not listen to me and I ended up writing a letter of complaint in response to her follow up letter on our conversation. She got so much wrong and assumed I was in a relationship with a man and dismissed everything after that. It was an awful conversation.
The MRI has been booked and paid for (£200 which isn't too bad thankfully) and if I have a clean smear test and a blank MRI from the area at least I know there isn't anything wrong in that way and I have more evidence (that's what I'm hoping) although I've heard endo can show up as a mass on a scan but they are doing a scan of my lumbar and sciatic area!
That's awful Tokyomadonna. I hope you can get a second opinion from someone a bit more sympathetic. My daughter's gynaecologist is lovely and, although she doesn't think it's Endo, she's open-minded enough to reconsider if continuous use of the pill doesn't do the trick. It did take us a year to finally get a referral, but having a sympathetic consultant makes a big difference. Your MRI sounds like a bargain - I looked into this myself and the cost of a private pelvic MRI was much higher. I hope it helps you find some answers and get some relief. My daughter's physio has also helped her a lot - nothing too vigorous, just some pilates type exercises, but it does seem to have made a difference to her ability to cope with the pain.
I'm doing physio at the moment as well (private through zoom due to lockdown!)
Thanks to this thread I've been looking up specialists (I think its cause I live up north that the treatment is a bit more cheaper) and I've found a private specialist in Manchester that is £200 for a consultation and £160 for an endo biopsy so I think I might have a plan b...hopefully!!!
Its also nice to hear that there are nice specialists out there and im happy to hear that your daughter will be listened to if needed. There's some good ones out there at least!
I am 44 and I wanted to share that it took me 6 years to get diagnosed (2019) and turns out I had both endometriosis stage IV and adenomyosis all along. My really heavy periods started when I started menstruating at 16 and I ended up on the pill to managed those for almost 20+ years .
I didn't feel any pain for that 20 years until in recent years I started feeling a pain near my appendix area and it got heavier each year. Then the migraines came severely and back pain and aches all over. I had 2 colonoscopys, 2 transvaginal scans and 1 MRI that revealed nothing!! None of them were looking for endo as my periods were fine.
In order to get to a diagnosis I sat in the GPs office AGAIN telling her my side paid was really strong and migraines were now weekly and impacting my life. My GP told me it was ‘Psychosymatic’ and none of the scans had found anything so all she could do was pain management. I came off the pill myself as I read online it may be linked to my migraines and they disappeared instantly!!!!!
But then the heavy periods came and pain in my side got really bad. It wasnt until I asked for a referral letter so I could pay privately for another MRI scan that coincidentally I ended up seeing a different doctor the day of my appointment, she was a young GP, new and had trained in endo. She said it sounded like a gynae issue and I immediately said ‘ no not at all, it cant be because it was my side’.
It was that private referral that ended up with a gynae and another MRI that referred me to a proper endo consultant.
What I am saying is sometimes what you say about where the pain is (in my case my appendix area) isnt always linked directly to GPs thinking this could be gynae or endo. So be persistent in getting your scans. Your gut and intuition are your best friend and I KNEW something was there.
I am now treating or with nutrition and diet change and seeing great results, opted not to have the surgery. Half the battle is getting to a diagnosis and the you know what you are dealing with.
Can share what I use for pain relief if you have read this far and are still interested lol
Sorry your struggling I was always told endo is hereditary trouble is I’m adopted and don’t know medical history of the female and male that made me. It’s an auto immune disorder
Oh no I can't imagine how hard it is for you. They should keep records on file for medical history. Its an important part of anyones life especially if you need a diagnosis.
Oh thank you for the recommendation! I've found it on Amazon that can be delivered tomorrow. I'm going in for my smear exam at the hospital tomorrow so I can read that while I wait to go into 'surgery' !
Good. I’m glad. I wish everyone with endo could read this. I see so much written crap, hear about so many useless and damaging ops, it makes me frustrated and cross....the more educated we can be as sufferers, the more we can push back and fight. Good luck with smear. It might help to take some mild painkillers before you go and when the speculum goes in to really really relax, think about somewhere blissful and trust the nurse! Nina
I'm actually going in under anesthetic so they'll knock me out so i won't feel a thing haha (its the 2nd time they've had to do the smear this way because its just too painful to do it any other way )
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Things are getting much worse now :(
whats the chances of getting pregnant if you have endometriosis?
Getting past this
Private GP to get NHS referral 
