Is it Endometriosis?

Hi all.

I'm new here, and looking for a little advice.

I haven't been diagnosed with Endometriosis, but have some symptoms I'd like your advice on please.

My doctor advised me to come off the pill nearly six months ago as I was on the combined pill, and I was too old to be on it (I'm 44) I was not on the pill for contraceptive reasons, but because of the health problems that I will list that seemed to be helped some by being on the pill. I had a few months on the mini pill, which didn't suit me at all.

I have been keeping a diary, and the symptoms are very much the same each month. . I have very severe ovulating pain, and have any time I've not been on the pill. This can make me doubled up in pain, my lower abdomen above my pelvic bone is very tender to touch. This lasts for 4 days, with 2 days being very severe.

. I have very heavy periods. It lasts for 4-5 days, but is so heavy I need to use double protection. I have to put a towel down when I go to bed as I always leak. I always have a lot of blood clots too. The period pains are unbearable. I feel bloated with a tender tummy. If I press above my pubic bone, the pain Is very bad.

. During these times of ovulation and periods, my bowel and bladder often feel affected too. I feel the need to urinate more often, my stomach often feels upset, and when I go to the loo to open my bowel or bladder, there is often pain (like a sharp dragging pain - best way I can describe it!)

. Sex is painful sometimes, unbearable during ovulation (Lucky I've had my children then) I also had an internal recently and that was very uncomfortable.

I have been told I have IBS, hormone imbalance etc. But I started to research my symptoms today, and I honestly don't think they are normal. I had an ultrasound scan when I came off the pill 6 months ago, as my Doctor wanted to check for fibroid's or cysts, but none were found.

Any advice from anyone would be great, and sorry for the long-winded first post ;)

11 Replies

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  • Hi!

    The only way to really diagnose endometriosis is through a laproscopy. It doesn't always show on an ultra sound. Sometimes they can see more on an mri. Keep pestering them! Your symptoms sound like it. But endo has similar symptoms to a few other conditions.

    Often women with endo are misdiagnosed as having ibs. Alot of us have the two together.

    Often women with endo have high oestrogen (hormone imbalance).

    If you feel something isn't right don't let it go. You know your body. Keep at them.

    Good luck:))

  • The diagnosis is by surgery and the treatment is surgery. It's best to seek out an endometriosis specialist and not just your regular gyno.

  • Has your dr ran any labs??? Tested all your hormone levels including thyroid and vitamin levels? Urine culture to check for bacteria or hematuria? Your dr should start first by testing your fsh(follicle stimulating hormone), estrogen, estradiol levels to first see if you are menopausal and to check if you are either estrogen dominant or low. There are quite a few diseases that share similar symptoms i.e. Interstitial cystitis/ pcos/ endometriosis. -and all are very painful.

  • No tests have been carried out apart from the ultrasound. I'm going to make an appointment next week.

    Does / did anyone have endo that was helped by being on the contraceptive pill? I did have most of the symptoms when I was on it, but not as bad so just curious.

    Thanks for the replies everyone.

  • Many women (including myself) develop endo when coming off the pill. It is driven by the form of estrogen called oestradiol, the strongest and very potent form that drives the menstrual cycle. During the first half of the cycle (the follicular phase), the levels of oestradiol rise and peak for a few days at very high levels around ovulation. Certainly in my own case it was ovulating for the first time in 10 years that triggered my endo. The combined pill aims to mimic pregnancy when levels of oestradiol are much lower to prevent ovulation. So if a woman stops the pill for periods of time the ovulatory peaks are re-established and endo will usually become more progressive.

  • I agree about going back to Dr and asking for far more tests. To rule out all other things.

    However, what you describe sounds like the endometriosis that I was experiencing, post-50, after I had been told to stop the pill. As someone above has said, you really do have to have a laparoscopy for endometriosis to be fully diagnosed. A scan is good to rule out a lot of other possible conditions, but it will often not spot endo, although a transvaginal scan may spot some types. But you do need to be sure there is nothing else going on.

    I would read widely in this forum, particularly posts by 'Lindle' as she knows a huge amount about Endo. Also look at the 'Endo UK' website (link at the top of this page, they 'host' this site on 'Health Unlocked' ), as - if you are in the UK - they give details of how you should be referred, and who should and should not carry out removal of endo tissue. There is a protocol in existence that says that GPs and general gynaes should refer you to special endo units.

    A laparoscopy by a general gynaecologist is okay for a diagnosis, but for a proper, thorough, search of the entire abdominal cavity where endo can be found, and for identifying endo in all its different forms, you need to be seen by someone at a 'BSGE Clinic'. These are specialist clinics all round the UK, where specially trained endo-gynaes work to find, identify and surgically remove endo. A lot of general gynaes who do a laparoscopy and remove the endo they find, use lasers, but the endo can just grow back ... and they can miss large areas of endo tissue, too, because they are not so well trained in work on endo.

    I had a lap and laser removal of endo when I was 52(?), but my pains were worse about 2 years later. I then had a 'Mirena coil' fitted, and this worked for me, although my endo was never as bad as most folk's on this site. The mirena only has progesterone, so it counters the oestrogen that cause the endo. There are progesterone tablets, but they are not targeting the spot. A lot of people find the mirena is not enough, so best to get thoroughly checked out. But read up as much as possible first. It's one of those conditions where you have to become your own best expert.

    Hope this helps, take care.

  • That is a very helpful reply, thank you so much :)

    I will let you know how I get on at the docs, and make sure I do plenty of research in the meantime.

  • Where are you in the UK?

  • Merseyside

  • That's good news Shar as in England you can exercise your rights under NHS Choices and request referral to a BSGE centre for suspected endo. At your age you need definitive diagnosis and treatment from the outset and can't afford to be messed about in general gynaecolgy. Have a look at my post on the treatment pathway. If you have the funds for a first private appointment I really would recommend it - you would then transfer to the NHS list for treatment. x

  • A quick update.

    Went to my GP today and told her my symptoms. She wants me to go for blood tests, and told me to try a different mini-pill called Micronor for 2 months.

    She didn't mention endo at all, until at the end of the consultation I asked could it not be it. She then said it was the first thing she thought when I listed my symptoms, and if the Micronor didn't help after 2 months she will refer me.

    Does this sound like standard practice? I was a little bothered that she didn't even mention it until I did!

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