I am awaiting my first laparoscopy for suspected endo. Can I ask straightaway for a full hysterectomy if this turns out to be endo?

[Dragonsfly]

I was diagnosed with PCOS in 2010 and this explained a lot of the problems I had been dealing with over the previous 23 years. I was put on the birth control pill by my GP when I was 11 to deal with excessive pain and generally feeling unwell for 3 weeks out of 4. This did help with feeling unwell but the pain stayed during my periods. I hadn't really been a 'hefty' girl until then but I found that losing weight (even though I did a lot of sports) was increasingly difficult. I kept taking the pill, on and off, for the next 18 years but started feeling unwell when taking it and decided that I preferred to stop taking the pill and just deal with it.

I went to see my GP back in 2010 because I had been bleeding for over 8 weeks and started feeling dizzy and generally had low energy. My GP referred me for blood tests and ultrasounds and PCOS was diagnosed. I received 2 medications to help deal with the severity of my bleeding (on average 7 days and using 10-15 pads a day) and the pain. These did little to nothing to improve the situation but my period did even out again although the severity stayed the same.

My periods had always been painful but over the last 6 or 7 months the pain was starting to increase drastically. As this was the same kind of 'crampy' feeling as normal, I didn't really pay much attention to it but I found that I was reaching for the painkillers a lot more. Then, about 4 months ago, it became really bad and I was doubling over at work. Nearly 3 months ago, my line manager send me home and I stayed at home until last Thursday with continuous pain. In this period I have been through the following pillar-to-post:

1. visited A&E - got send home as bloods and urine were 'fine'

2. visited GP - referral to gynaecology (gynae) and received liquid morphine prescription

3. attended gynae - had ultrasounds of womb, ovaries and kidneys - results: PCOS confirmed, slightly enlarged kidneys - referred back to GP for referral to pain management or gastro

4. visited GP - referral to gastro for possible bowel problems

5. attended gastro - 'Why are you here, they already know you have PCOS. There will be nothing I can do but will send you for CT.'

6. had CT - no issues found and referred back to GP

7. visited GP - referral back to gynae for suspected endometriosis

8. attended gynae - will do laparoscopy (in next 4 weeks) but might not find anything

I am now 36 years old (my husband is 43) and, although we would love to have a family, we came to the realisation that with my PCOS this would be very difficult if not impossible and have resigned ourselves to this fact. We would love to adopt and this is a discussion that we have been having since 2010.

I know that standard procedures will be to put me on HRT first and deal with endo via laparoscopies and that hysterectomy is only a last resort but can I ask for the hysterectomy regardless of these procedures? I have now returned to work (on tramadol and diclofenac) but the pain is still really bad and I really cannot see myself continuing like this. I am at the end of my resolve.

Sorry for the long post.

[Impatient]

You can ask - but I very much doubt they will give you full hysterectomy at your age when there is no need.

Another disease or condition you should look in to is Adenomyosis which could be the cause of endo like symptoms - but is not endo.

adenomyosisadviceassociatio...

and should be considered if the lap op shows no endo.

The cures for that, is a hysterectomy - but only in the sense of having the uterus removed.

It is ALWAYS preferable to keep at least one ovary working and inside you unless you have ovarian cancer or are BRCA1 or 2 gene positive.

The reason is that having 1 ovary there will save you from having HRT every day for decades more. If you do have endo and the ovries come out and you go on HRT, the HRT is adding back the hormones tht feeds the endo - but ovaries do so much more - like helping with bone strength and growth, and healing, and also protecting your heart too.

So while HRT is going to help in some ways for not having ovaries - it doesn't do everything good that an ovary does.

The NHS guidelines are that wherever possible an ovary whoule be retained for the good of your longterm health.

However it is early days yet - I know you have been suffering years - as many of us have been before we get diagnosed with endo, but there is a lot tht can be done to improve things by having a lap op to diagnose the extent of the endo if it is there.

Then having the right surgery to remove all existing endo, and then taking steps to stop or reduce yor periods which reduces the risk of new endo spreading.

In the surgery - if you hve PCOs, as someone posted yesterday - there is a procedure for drilling or rather burning the ovaries in a small patch to try and get them to start ovulating regularly again.

Your fertility can be check during the procedure with an HSG which squirts dye along the tubes to see if there is a blockage along the fallopian tubes preventing any released egg reaching the uterus. If that is the case on both sides then you would require IVF to by-pass the blockages. Sometimes the blocks can just be cysts or adhesions in the way on the end of the fallopian tubes or wrapping round the ovary - and these can be cleared away to improve your chances of success, but the chances are still reduced with Pcos.

Having a lap is the start. The surgeon can have a good and thorough look around, and see what issues there are going on. Not just looking for endo specificaly but also for cysts and adhesions and so on.

When you have recovered from the op you will then have a much better idea about what is going on and what your chances are of a natural conception and that is then the time to make a decision about any subsequent surgery and follow up treatments.

If you do have endo- to be sure the surgeon has the best chance of seeing it, it is ideal to be on a period or recently just finished a period at the time of the op - the endo will be active and easier to see.

If you are stopping your periods on the Pill or implants etc then endo can be missed by inexperienced gynaecologists.

If you do have endo, even a full hysterectomy is no cure for it. because endo grows on other organs tissue and ligaments - not just inside the uterus where it is meant to be.

The only way to be rid of existing endo is to hve it surgically removed from each and every location where it is growing. It isn't a cure, but it should reduce your endo pains a lot, and then you can take steps to stop new endo getting out and about escaping from the uterus.

While you wait for your op - do as much homework as you can on endo and adeno, and the treatment options you may be offered. Don't rush to hysterectomy - it is not a cure for endo at all - as endo feeds on oestrogen which is produced elsewhere in the body besides the ovaries - e.g.tummy fat, brain and so on.

The only benefits to hving the womb part removed is stopping your mestrual periods (but the endo will still hve its little periods wherever it still remains in you)

and removing adenomyosis which only grows inside the uterus muscle walls.

Neither disease requires the ovaries to both be taken out.

[Dragonsfly in reply to Impatient]

Thank you for your reply. I am aware of the issues that can arise from a full hysterectomy but was unaware that leaving one ovary behind would be able to deal with (most of) those issues.

I have had a look at adeno and noticed that the symptoms are quite similar to endo but I will definitely mention this when I go in for my laparoscopy as I have read that not a lot of specialists are aware of the possibility.

But, after all these years, knowing that there is a name for what I suffer is already proving to be helpful. Even if it is not dealing with the pain...

[Clem01]

I would like to offer advice but Impatient has given you everything you need. I'm having a hysterectomy in August however I have endo, adeno, pcos & fibroids. The most important part to my consultant was did I have children. He thinks I def now need a hysterectomy but is only considering it as I have a nine year old & just had miscarriages since. I've fought endo for years but now with adeno and my body rejecting the coil twice I've given up. I'm hoping this is now the start of my new life as I need to be well for the child I have. Don't give up trying for a child if it's what u really want. Some people beat the odds it took years but we did it. Hysterectomy is always last resort x