Where to turn

Hi everyobe

I am super nervous about posting this. I am after some advice.

Having suffered severe lower back ache, lower abdominal pain, nausea, not finishing meals, not eating, flooding when on and period type pains throughout the month i was referred for an internal and external ultrasound and swabs plus bloods.

All came back clear so my gp said it must be endo so i was referred to a gynaecologist.

I was rushed through for an appointment as i visited the doctors in tear numerous times with my last two afs and was prescribed cocodamol but i also have bad IBS which ive had since 13 so it just makes it all worse. It feels like shooting and stabbing pains all through your pelvis. I spend hours in the bath and walk around with water bottles on my back and stomach.

I was very disappointed with my appt with the gyni today. I walked out and burst in to tears. I had another internal examination and he felt my stomach and aaid yes i do have endo, as much as he can say without a lap. He wont send me for a lap as im only 25 and says it too risky- i just feel im not worth the money being spent. I understand others will have it much worse than me but also know that i cant continue like this. He says i have to try the pill first but i dont want to do this.

I was on the pill for years but cane off as i felt gormonal, moody and low with irregular bleeding and feel much more balanced emotionally since coming off it. Plus, i can only take progesterone only pills due to high levels of breast cancer.

To sum up i am umaure what to do. Do i push for a second opinion? Do my husband and i start trying now? A baby anytime soon isnt part of the plan, but i dont want to start trying in years to come and have problems id prefer to know sooner than later.

Sorry to ramble but i only know a cousin who had this no other friends or fanily so feel nobody can understand properly.

Thanks :-)

5 Replies

  • hello, I am the same as you, I have suffered for years with IBS symptoms, chronic pelvis pain etc even when on the depo injection. I came off all contraceptives because I was told this could be masking a problem,

    3 years off contraceptives and now I'm told its endo, they refused to do a lap because of the risks, I seen my gp again because I wasn't happy and wa seen again and told I s too heavy to have a GA, I have left the docs and hospitals many times in tears,

    anyway in your situation if you want to have children in the future I would start trying now as you can damage your chance to conceive and end up having IVF.

    also they say that when your pregnant the endo becomes dormant and can die there for after having a baby you may be cured.

    my situation is different as I have decided I don't want kids.

    a lot to think about and discuss with your husband,

    also I suggest you get a book maybe off amazon and have a read of it

    don't feel you are on your own, also see another specialist if you feel you could be delt with differently


  • You are not too young for an operation. I would ask for a second opinion and make sure to write everything down, with all your symptoms and keep nagging. I know this is horrible, but if you don't do this, they won't do anything.

    With trying for a baby, maybe find out first what is wrong, what they can find. Sometimes endo can affect your fertility, but you can't know this until they will check you properly.

    It is crazy that your gp said that it is endo and the gynecologist doesn't want to investigate further, even after saying that it is possibly Endo.

    You still have your problems and still not really sure if it is endo and don't do something you don't want like to have the pill if that made you feel horrible. I stopped taking the pill 9 years ago, because my mood swings were so bad, migraines and other problems. After trying several pills with various side affects, i had enough and stopped all together, even though the GP was pushing me to take them, but i just had enough to be tested all the time and it makes you feel horrible.

    Dont worry about sending a message, it is good to write it down and ask for help. Most of us here been through the same or just starting with this Endo journey and it is good to understand what it is, what it can do and how other women are coping, because it is defenitly not fun.

    I wish you all the best and if you need to ask for more info, we are here :)


  • Sorry to hear your in pain and not getting anywhere!

    I think that gyna was ridiculous. I am 24 years old and I've been suffering with the exact same symptoms as you especially cramps and sharp stabbing pain is and I also do you have IBS.

    I went to see my gynaecologist about a week and a half ago he did an internal examination after having blood tests and Urine tests aswell as internal and external ultrasounds it came back clear apart from they found blood in my urine.

    He said that he thinks I have endometriosis and will perform a laparoscopy on me mid December. He said nothing about being too young and insisted that it would probably be the best thing to get to the bottom of the problem.

    I suggest if I were you definitely getting a second opinion may be going to a different gynaecologist or maybe even finding somewhere that specialises in endometriosis.

    I hope you get this sorted as soon as possible and please let me know how you get on Xx

  • I am angry for you! It sounds like you've been fobbed off!! They can't see on an ultrasound, they can't feel via internal examination endo! They have to do a laparoscopy! I'm 27, no kids, no periods (I have PCOS as well)

    My gynae said the op was the best way to see if it was endo or not...

    I had my appendix out in 2011 and had been complaining of mass pain just about my pelvis since my appendix op! I had gone thru every test. Bloods, ultrasound, bowel functions, colonoscopy, found nothing except PCOS which they knew about...

    I had had PID,(pelvic inflammatory) before and supposedly IBS which the powder stuff didn't help at all...

    My gynae consultant did the lap and found scar tissue from my appendix and got rid of it... Found endo spots too, removed most of those but found some of my urethra which is why I was in pain urinating...he couldn't remove them without damaging me so didn't.

    Seriously, you need to get a second opinion ask your hospital to be referred to another gynae... Ask for a lap and talk about all the issues you are facing... Get upset and show them the amount of pain you are in. And that it's NOT in your head...

    I feel so sorry for you! Do your research about it.

    After my op was I told if I wanted to try for kids go ahead... If not yet( I get married next year) then I had the choice of the mirena coil or the mini pill ( as the general pills make me suicidal with the hormone fluctuations)

    I chose mini pill as I've heard bad things about the coil. Plus I don't get periods so what is the point in the coil...

    Hope this helps and PM me if you want to ask anymore. Xxx

  • Hi

    Thanks so much for replying :-) it so helps.

    I have been back to my GP today who was sympathetic and agreed that it wasnt really and answer and striaght away said she was happy to re refer me for a second opinion. Last time this only took 3 weeks hoping its about the same again.

    She reassured me about fertility and thinks if we wait a couple of years we should 'be ok' but also said if 'it wouldnt be too bad for you try for one now'.

    I just want to know 100% cause until I have had a lap even though theres all the right symptoms its still not definite.

    Thanks x

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