A&E Treatment

[emmadickinson]

Hi everyone,

I'm 20 years old and have experienced symptoms of endometriosis for a year and a half now. Yesterday evening a passer by found me in pain and the next thing I knew I was in a cubicle in accident and emergency. They ran blood tests, urine tests, physical examination and questioned me on my symptom history. The only thing I was offered was codiene and naproxyn to help with the pain, and was sent on my way.

After having an ultrasound scan and being told by my doctor that they are reluctant to perform a laparoscopy because it can aggravate endometriosis, I'm very stuck on where to go from here. I want a definitive answer. All I have been told is that 'Your symptoms are the same as endometriosis, that is probably your issue.'

I experience extremely painful periods, constipation and of course the opposite, back pain, fatigue, mood changes and sometimes.. painful intercourse. This is rather problematic as I am currently at university and endometriosis affects my studies and grades.

Any advice?

Thank you, Emma

[Jasminem0112]

Hey,

So I was dealing with very painful periods for years and years. When I was 19 I started complaining more to my doctor and telling her what my symptoms were. She constantly said it sounded like endometriosis but she never did anything but suggest birth control and pain management. I got so tired of not being heard so I found a different doctor and after about 2 months of seeing her she scheduled my laparoscopy. It was definitely endometriosis. I'm 23 and had my laparoscopy 10/17/16 and my symptoms have actually gotten worse. The pain is worse and more frequent, intercourse is very painful and the pain lasts for days. I wish I would've known that the laparoscopy could make it worse because now I'm dealing with what I believe is the bad side of the pain. I'm currently taking Seasonique so that I only have 4 cycles a year and I'm doing pain management with Ibuprofen. I would definitely suggest getting a second opinion and doing more research as far as treatment options. My doctor told me to decide if I want more kids in the future and to think about a hysterectomy because that's the only definite way of treating the pain. I really hope this helps, I know how frustrating this all can be.

[Allyson1 in reply to Jasminem0112]

I'd be curious to know if you've tried an endo diet? In my 20s my endo worsened after surgery, and frankly, it was so bad I wanted my life to just be over. I read about other women doing better on an endo diet, but it seemed too good to be true. But I've found that the largest pain relief came from that. It took a good year, and it's work, but I have more of a life now.

[Jasminem0112 in reply to Allyson1]

Hey Allyson,

I've eliminated a lot of foods but I wouldn't necessarily say it's an endo diet. I should probably do my research on that because the pain is unimaginable. It doesn't make it any better that I'm a student, a wife and have 2 kids ages 4 and 9 months. I wish my husband understood more than what he does. Thank yoi though, I'm going to look into that.

[Allyson1 in reply to Jasminem0112]

Good luck to you! Feel free to PM me if you wish.

[Jasminem0112 in reply to Allyson1]

I sure will, thanks a bunch

[emmadickinson in reply to Jasminem0112]

I feel as if I need to be tell the doctor that I need a laparoscopy! This page has helped me discover that there is an endo diet?! I may try that too. The doctors just try and tell me 'there's no point'. How can I then be formally diagnosed? Are they allowed to put it in my medical notes without a formal diagnosis?

Emma x

[Jasminem0112 in reply to emmadickinson]

Hey Emma,

Before I was diagnosed they only put it my chart that ig was "possible that I had endometriosis".

[Allyson1]

I'm sorry you are in pain. I've been there too. For me, the pain was aggravated after surgery, but that is not the case for all.

The biggest part of pain management for me was huge diet change- no soy, no gluten, no dairy, no processed foods, no sugar, and plenty of fats from fish, olive oil, avocados, lots of vegetables, etc. That's made the biggest difference for me. Enough that I'm up and walking around most days. Painful sex is much improved as well.

Not everybody does that route, but it's helped me delay another surgery.

If I knew then what I know now I'd do an endometriosis diet first, for a good year, and to see how it settles. Also see an endocrinologist to check hormones. Your mileage may vary though.

[emmadickinson in reply to Allyson1]

Hello,

I have never heard of an endo diet before! This is news to me! I may give it a go! Even though my pain has been slightly lessened due to the implant, I want to avoid the hospital trips and days stuck in bed as much as possible!

Thankyou for your help and I'm glad you've found an effective way to deal with the pain!

Emma x

[Allyson1 in reply to emmadickinson]

I never would have thought diet change could make a difference, my pain was SO ingrained. There are endo dieticians in the UK. It may take a while to see improvement. Good luck!

[JessAH]

Hi Emma,

Having the same troubles too! People saying it's endo but doing nothing to help. I'm finally having a lap in January to see what's going.

I'm in my final year at uni and have only been in three times as I'm in so much pain I can't get out of bed.

Did you find that cocktail of pain management worked as everything they've given me so far hasn't touched it?

Jess x

[emmadickinson in reply to JessAH]

Hi Jess,

It's so frustrating having doctors tell you what's wrong with no real way to deal with the problem!

I'm in my second year at uni... luckily my pain is less frequent but a higher intensity when it hits. My University have been brilliantly supportive with my condition.

Codiene has always worked for me, it sends me off to sleep for a few hours and leaves me drowsy for the rest of the day however, which is not ideal!

Perhaps have a look at what dosage of codiene they are giving you... Mine had to be increased from 15mg to 30mg!

Emma x

[Chloexxoxx]

Hi I have had a laparoscopy twice and the doctors are not helpful one bit with me they just tell me to cope how do I cope with my everyday life like this ? They have recommended I have a mirena coil will this help?

[emmadickinson in reply to Chloexxoxx]

I have only been fitted with a contraceptive implant... my doctor suggested that before I try the coil as for some women it can help with endo pain! Did the laproscopy show up any signs of endo?

Emma x

[Chloexxoxx in reply to emmadickinson]

Yh they removed it twice the last time I had my laparoscopy it was found on my bladder and Bowell but they couldn't remove that Incase of the risk of perferating it xx

[emmadickinson]

I have experienced passing out and vomiting with the pain too! I have seen those devices but was rather skeptical.. I may have to look into it. Some other's have mentioned this endo diet... complete news to me and nice to have a new refreshing way to try and deal with the pain!

I have been fitted with the implant which still needs time to work.. just waiting for it to kick in and hopefully help!!

Thankyou for your advice!

Emma x

[ladygodiva0101 in reply to emmadickinson]

No problem, good luck! Hope some of this helps!

[sammy1988]

Hello I have endometriosis for 10 years now which is a ongoing thing the amount of time I have been to a+e and the havent done anything is unreal so I feel for you I would say just keep on amd keep going back they did put me on hormone injections which helped loads and diet is also something I changed there is a utube channel for endometriosis which helped me loads have a look. Hope this help .

[Endo101]

It's a tough one. (I'm a uni student who was diagnosed via lap this year). Have you tried any hormonal treatments like the pill? If you haven't, they would be good to try because I think they can slow the progression down and manage symptoms. When I went on the pill, it largely controlled my symptoms for about 2-3 years. However, that doesn't remove any endo or adhesions you already have so even if the symptoms are managed they are still there. Also there's no guarantee they will slow down the progression and it's important any endo spots and particularly adhesions are not left for so long that they cause blockages or damage.

On the other hand, whether you have endo or not laparoscopies like any other abdominal surgery can actually cause adhesions in the first place and of course come with the general risks of surgery.

I think you have to consider what you have or haven't already tried, the level of symptoms, fertility and the risks of laparoscopies.

[Endo101 in reply to Endo101]

For example, over the last year I've been so ill that I've been nauseous almost every day, rapidly lost weight, was regularly vomiting. I had no quality of life (feeling extremely nauseous for a year is awful especially when the antiemetics I was given didn't really work). I had already been on two different pills before and whilst they controlled symptoms for 2-3 years, it started to wear off.

I had had symptoms for five years which had got worse and not knowing what was wrong with me was affecting my mental health. Having children in the future is also very important so I wanted to know if I had endo so I could make plans to have them earlier.

Considering how ill I felt on a daily basis, unless there had been a major complication in surgery, I didn't have much to lose. Therefore it was worth the risk. As it stood I already had pretty extensive adhesions in my abdomen and even though surgery risks causing them, that is only a possibility whereas not having it would've meant my adhesions would've just stayed there. That was a certainty.

[Gweeda]

Same symptoms! 23 years to diagnose endo has led to it covering my insides and creating cysts and a mass in my pelvis (which they are pretty sure is a chocolate cyst). You NEED the lap. It's the only way to diagnose endo. If it's a gynae consultant who does it and they only find a little endo, they can remove it. Turns out I wasn't ACTUALLY constipated by the way. It was the mass in my pelvis which has created a triple prolapse, making having a poo nigh on impossible.

If this doctor won't refer you, get another opinion. Ask directly for a referral to an endo specialist centre if they are so certain that's what it is. They can't without performing a diagnostic lap for a positive diagnosis.

Good luck! You need to really fight your own corner with endo I'm afraid!