Please help! Any advice welcomed :)

[Charleyct]

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, constant infections ie chest had them as pms as a teen. 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, I can barely remember what I'm doing! Is this related? Any support would be much appreciated, and thank you ❤️

[rachrich80]

You poor thing it sounds like you have had an awful time, I am no doctor but would say you definitely don't need a mental health appt you need to see a gyny urgently. I think the fact they put you on zoladex confirms yohr doctor already knows this. It took me nearly 10 years to get diagnosed ( I got fobbed off with them saying it was due to 2 c sections etc etc ) having a diagnosis doesn't help with the pain but does stop you feeling like your going mad. As far as I know the only proper way to diagnose is through a laparascopy, I would try and get your gp to refer you for 1 asap. And until then there is loads of information on here

take care and good luck

rache xxx

[Charleyct in reply to rachrich80]

Thank you so much! I think I was actually beginning to believe it was in my head! The more I learn about endo, the more my life falls into place. I will dig my heals in and not move until I get referred, can you opt to see a endo specialist do you know? Thank you again

[rachrich80]

Oh and swap gps I swapped to a woman gp and the change in attitude and action was immediate.

xxxxx

[rachrich80]

Your welcome its a horrible isolating illness and I really don't understand why we all have to go through so much to get a diagnosis, I think it probably depends on your local hospital as regards who you see but definitely worth a try. I have been seeing a lovely normal gyny for the last year but am seeing a specialist surgeon next Friday hopefully to get a date for my excision surgery :))

Take care and keep us posted xxxx

[Charleyct in reply to rachrich80]

Thank you, I will and good luck for next Friday xx

[Impatient]

You are doing exactly the right thing. Yes you do need to fight some GPs and even switch to more sympathetic ones, but a lot of what you have mentioned could certainly tie in with one of two diseases. Endometriosis or Adenomyosis.

Endo is uterus lining cells which are nesting on any other tissue, ligaments or organs elsewhere in the body - but usually in the gynae region. They're only visible with laparoscopy operation (key hole).

Ovarian cysts come in different types one of those is an endometrioma or blood filled cyst - which is indicative of endometriosis and will show up on an ultrasound scan.

Having a tilted or retroverted uterus that gets stuck with adhesions tilting backwards is very common with endo. It is meant to flex both ways, but with endo tend to get stuck the wrong way. This puts the cervix out of allignment and is one of the many causes of sex pain.

It may simply be that the adhesions from the pregnancy and surgery have grown to such an extent they are now glueing all your pelvic organs to one another - this is easly rectified by surgery to cut back the adhesions - but they will in time grow again -they always do.

Now if at the lap op the adhesions are not too bad, and there is no sign of endo - next step would be an MRI scan of the uterus while you are having period.

There is a very similar disease to endo called adenomyosis, adeno for short.

It does exactly what endo does and bleeds every month when your uterus cells shed their linings and bleed. They key difference to endo is they only grow inside the muscle walls of the uterus nowhere else except some theories have them also able to grow in bowel muscle walls too - but that is not yet proven to my knowledge.

During a period they shed their linings and bleed and the blood is well and truly trapped in there which causes lumpy bumpy bruise swellings in the uterus muscle which shows up very well with an MRI scan.

Adeno is fully treatable with a cure - that is have the uterus removed (a hysterectomy) but keep the ovaries and you won't need years of HRT afterwards. If removed = all adeno in one go is gone.

Certainly worth considering if you already have kids and adeno is found.

Endo has no cure - because it can and does grow on anything it wants to.

You can hve surgery to remove old endo lesions but it doesn't stop new ones forming elsewhere.

you have already done all the pre-diagnosis tests for endo - including the Zoladex , so surgery is your next step.

All of this is enough to try the patience of a saint and add to that two kiddies to care for no wonder you are at your wits end.

Stay on all the meds you are currently on - they will all help you get through the wait for surgery. Hopefully that op will diagnose the problem and get you on the right track to relieving the pain by getting the appropriate surgery. With that done you won't have need for the pain killers, and you will feel so much better coping with everything that even the citalopram won't be needed for much longer.

I would keep on with tht throughout the op(s) because the general anaesthetic and trauma to the body can easily cause post op depression and does for do many patients regardless of what there op was for, so stick with it till you are well on the mend afterwards.

The website for Adeno is

adenomyosisadviceassociatio...

Stick that in your favourites - it not only explains adeno so well - it has super advice on having operations and how to prepare for before and after.

If your mum is right (and I am inclined to think she is on the right track) she deserves a big box of chocs for steering you in the right direction after watching tv program.

It is all about awareness. Very Best of Luck and keep us posted on any progress made and do ask questions - thousands of members on this forum now and heaps of experience to draw on.

[nancynursez637]

Pain with tampons, sex, bms, is often associated with endometriosis or pelvic floor dysfunction. But the fact you have pain with cycles also suggests poly cystic ovary, ovarian cysts and or endometriosis. Wondering if you need a referral to a speciality clinic?

[Charleyct]

Thank you all so so much for the useful info- I just know it will all come in handy!! I have never heard of adeno but I will definitely look it up xxx

[Charleyct]

Hi there I had my gp appointment today. My doctor was more than unimpressed that I was firm and filled with facts, with a good friend at my side and ready to take him on!! He feels that I am trying to medicalise something that isn't a medical problem, (I don't think he listened to a word I said!!) again it's all to do with my depression, to which I said am working through, attending counselling on a weekly basis and improving everyday with. (He totally ignored my comment) he had a prod of my tummy and said he will do a referral to the endo centre I had found but said it won't help. Still I got what I wanted and hopefully I am on the right path now, even if I am doubting myself again. I will probably end up looking even more of a hypochondriac than they already think I am if I am wrong but it's totally worth a shot. Thank you all for your advice

[gemmap in reply to Charleyct]

I'm glad you got your referral to an endo centre as time has taught me that not all gyne consultants are upto date with the different forms of endo and their different apperence I ended up under a general gyne and they were my problem as I had a negative laparoscopy turns out my current endo specialist said stop taking the pill before the op then everything is via able as I would be bleeding and enflamed also he explained some general gyne don't recognise the early stages of this horrible thing it turns out 4 years after a negative lap I did have endo as discovered 2weeks ago. It's been a battle to get gp to listen to me they really don't like been told how to do their job as most of us probably would not I suppose it's frustration as you put your faith in them. I too was told it was in my head told I had depression been on and off anti d tablets for 10 years all along it has been the lethargic feeling and the constant pain and battle with the gp that I would say had lead me to feel that way! So keep pushing don't stop until you get answers do your research and if so change doctors Iv changed surgeries and gp inside that surgary as well!! Good luck x