JuliaJambo2 years ago

Hello dear,

I am so sorry to read you are in so much pain.

My advice would be to ask your gynaecologist for an MRI, because ultra sound cannot diagnose endo if it is deep endo.

In my case I only found out because I had a cyst in my ovary and then they prescribed me an MRI, just to find I had deep endo in my bowels. This made all sense because of my symptoms related to bloating and pain.

Also, it is very important to take care of your diet. Try an anti inflammatory diet with omega 3 sources, dark green vegetables and try to reduce caffeine (it worsens the pain), processed food, gluten and dairy. Most of people (including doctors) have no idea of how diet impacts in endo symptoms.

best wishes

🥰

boodles21 in reply to JuliaJambo2 years ago

Hi JuliaJambo! Thank you for replying.I eat a very clean, anti-inflammatory diet already due to my partner having crohn's. I just don't know how else to ask my GP to support me as when I had an appointment with a different gp last week, they just told me to read a book on eating healthy and gut health. It just frustrated me and made me feel even more helpless. I have another GP telephone consultation tomorrow. I don't know how much I can push for a gynaecology referral but I don't know what else my GP can do for me now other than a referral as I have had so many blood tests now and an ultrasound and still no closer to an answer.

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JuliaJambo in reply to boodles212 years ago

Hi,

good to know you have a good diet already.

I had the same situation with my GP not wanting to refer me.

In my case I had to emphasise to my GP that my symptoms were severe and affected my life. And I clearly asked for a referral.

You can ask your GP if you could have other scans before meeting the gynaecologist because it might take a while to have an appointment.

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AllthatGlitters2 years ago

Hi my pain started on the right hand side all of a sudden one day, it doubled me over and I have never been right since.They initially thought it was appendix but done an ultra sound scan and found nothing then got sent for an MRI which told me I had adenomyosis. Also had a laparoscopy and diagnosed with endometriosis.

You need further investigations, some doctors seem to just throw pills at the problem. I was told for years it was IBS and it wasn’t.

You have to be really strong as it’s sometimes hard to get a supportive doctor who is willing to send you for more tests.

Painful periods, heavy bleeding NBC, false labour pains is not normal and especially if it’s interfering with daily life.

Hope you get some relief soon & we are always on here for support x

boodles21 in reply to AllthatGlitters2 years ago

Thank you so much for your reply AllthatGlitters!

I am going to push for further investigations tomorrow at my appointment as this pain combined with my heart condition was just too much this weekend.

I know I need to push harder, it is just hard as I started to convince myself maybe it is all in my head (I did the same with my heart condition). I just need to trust that I know my body and keep pushing until I find someone that will help and investigate.

Finding this has already helped so much in knowing that others experience similar things too and have had to push hard. I will keep pushing for more to be done! X

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AllthatGlitters in reply to boodles212 years ago

Hey it’s certainly isn’t all in your head and never think of it like that. As I say to my family, I know when something in my body is wrong. It’s a feeling you get and you can’t explain it. If your doctor isn’t that good then maybe change to a different GP. I only finally got the help once I had moved to a different area, found an amazing doctor and she took me seriously as she could physically see how ill I was/am .... this site is just great as I don’t know if you have friends who have gynaecology issues? I certainly don’t and it allows us to speak to each other and know exactly how we feel x

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lemon_tree2 years ago

Hey hun, I'm so sorry that you're in so much pain and I hope you can get some help at your appointment tomorrow!

One thing I would recommend is taking a notebook or having a note on your phone of all of your symptoms such as where you feel the pain, if it gets worse with your cycle, and all of the interferences it's having with your daily life. It's also worth noting any questions you want to ask such as specific endo questions and about any extra painkillers. The first few appointments that I had I ended up so overwhelmed I would come out of the doctors and would have completely forgotten some of the questions I went in to ask! If you search 'first appointment' on this page people have commented really useful things they wished they'd asked earlier.

I hope this helps and if you ever need to, please feel free to msg me. I hope your appointment goes well tomorrow xx

Noodle19842 years ago

I am so sorry you’re struggling. This is not an easy road but you will get through this. Always remember that you know your body best. If you think somethings wrong then there likely is. I have 18 chronic conditions, including Endo, adenomyosis, and fibroids. I wish I was your age when I started to put my foot down. Unfortunately Endo will not be seen in a scan unless a very skilled Endo specialist does it. I have had at least 15 types of imaging over the years of my pelvic area and none picked it up. Not even a pelvic specific mri.

I am 36 and was just diagnosed last 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). I say this because I have a high pain tolerance so I just thought it was normal. But 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 was on birth control until I was about 28 when we started trying for a baby. I think coming off the pill was a perfect recipe for my Endo to grow. We lost the baby and were unable to conceive again. Now with 18 chronic conditions I’m unable to have children. Being on the right type of birth control will preserve your fertility.

Everyone hates this 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! Just keep hanging in there. 💕

Angellouise2 years ago

I’m so sorry your in so much pain. Your story sounds exactly like what my daughter is going through. We are waiting for a CT scan or MRI. I’m trying to find an endometriosis specialist to see if doctors are missing something. I wish you luck

PurpleSynesthesia2 years ago

Morning lovely,

I'm 12 years your senior & am on a similar stage in my journey to you. So good that someone has taken you seriously but she needs to put you on the list for a laparoscopy now - no reason to wait. Time only makes endo worse.

That's the list a lot of us are waiting on right now & it's the only way to accurately diagnose the locations & extent of endometriosis, & also excise it - it can partially show on MRI but won't be the full picture. General gynae can also miss endo because they're not experienced enough to know where to look (please research as it can be found all over the body). Always best to have a specialist treating you.

There's lots of good advice on here already so I won't add much. Here's my very condensed advice.

Get a TENS machine (apparently there's a wireless, heated version, which sounds amazing)

Get a nice wheat warmer bag that you can literally wrap up under your bottom & sit on it.

We're all in this together - at various stages, but we're all here & nobody is imagining anything. Stay in touch xx

JOSANDY402 years ago

Well it does sound like it some type of Female illness, perhaps Endo.Firstly I would say through my difficult Journey with Endo, excepting it, not stressing up as its a long term illness and working with its symptoms will help you. Your mindset is paramount.

There are several drugs to treat Endo and without them I couldn't of maintained a career.

Many Endo suffers find Yoga, Reflexology and Healing helpful. I must admit I thought it was probably rubbish and past it over for several yrs. My Tens Machine was the best purchase I made. Difficult to tune in with levels and types. I found the back pain setting the best, setting the pads almost on the sides of my hips at a very low setting. Belladonna, which is part of Busopan. Eating souable fiber only, cutting out Gluten and Lactose, eating smaller meals, cutting out foods containing histamine like Bananas! Drinking fennel tea for spasms.

Making sure I made up my sleep. Making sure I empty my bowel. Drinking plenty of water, reducing sugars and yeast intake. Taking anti Inflammatory painkillers on the days with pain and anti histamins. Hotwater bottles front and back. The importance of getting the pain on start under control become it gets bad on that day.

I hope you get a diagnoses soon.

Best wishes J

boodles212 years ago

Thank you for your replies and kind words.

My GP has been great and managed to squeeze me in the afternoon to have my copper coil removed and I have been scheduled to have the mirena coil on Wednesday next week.

Whilst I was there she did an examination and told me I have an inflamed pouch of Douglas, so she is 99% sure this is endometriosis however, that it can only be confirmed with a laparoscopy if needed in the future.

Your kind words have really helped and have reduced my worries and anxiety. I really am so thankful I found this community of wonderful women! Xx