Could I have endometriosis? Advice needed please.

[IrisGouldianFinch]

Dear All,

I'm 51 and I had a subtotal hysterectomy last year. I needed the surgery because I had large fibroids (the surgeon told me they were 9 centimetres). I was suffering from bad period pains, heavy bleeding, and days when I felt nauseous and nearly threw up in the mornings. My doctor gave me some pills to help with the nausea. The surgeon wanted to remove my uterus (leaving the cervix) tubes and ovaries. After my surgery she told me that she removed my right ovary but she couldn't find the left one. Perhaps it was hidden. It was difficult to remove my uterus because lot of tissue stuck to my bowel. The surgery was becoming risky because I was bleeding so she had to end it.

After the operation I had a bladder infection which I took antibiotics for. I had no other problems and I went back to work.

However, two months after the operation there were three days during which I felt awful and I couldn't get out of bed. I had some light cramps in my stomach and just generally felt horrible. We noticed that the previous month at around the same time I had three days during which I felt terrible. At the time we thought I was dehydrated. Three weeks later again I had three days of slight pain and being nauseous. I had to take the anti nausea pill my doctor gave me before my surgery.

I've had two ultrasound tests since then. The tests confirmed that I still have my left ovary. I told the doctor about the times I've been feeling unwell and nauseous and asked if it could be caused by hormones released by the ovary. She said she would write a letter to the surgeon and ask for me to have a gynaecological exam.

The problems have continued with me having four or five days in a row of having abdominal pain, nausea, feeling woozy, being unable to concentrate and wanting to sleep.The nausea gets better in the evenings and I can eat a normal meal then. During the day I can only eat a piece of toast or a banana at a time. My husband has to run the house and do the cooking by himself. He's told me he feels isolated because I hardly talk to him during the days I'm affected.

We've been keeping a diary of when I feel unwell. We can't find any regular pattern. Sometimes they happen three weeks apart, sometimes I get them ten days after I last had them. I've been keeping a diary of what I eat as well to see if there is anything that's affecting the cramps. I can't find any connection between what I eat and when I feel unwell.

Because of the cramps and nausea I've been missing work.Because of the unpredictability of the cramps and nausea I have had to call in ill meaning the timetable has to be rewritten at short notice, and the manager has to find cover for the hours I was scheduled for. This has caused a lot of tension.

My husband and I can't make any long term plans because we don't know if I will be well or not a week in advance. We can't plan to go on holiday because we don't know if I will be well enough to travel.

Before the operation I felt my life was on hold. We hope that after it was over and I was recovered we would be able to move forward with our lives. Now we feel we're in limbo. I tell my doctor about how unwell I feel. I've been told that they have referred me to the hospital to have tests in the gynaecology and gastroenterology departments.

I'm fed up with being unwell and I'm beginning to feel afraid that the cramps and nausea will go on and on. Can anyone help? Has anyone had similar problems?

[Mabes]

Hi Iris

Have you gotten hold of the report and any images from your operation? This might give insight into what is going on and will be useful if you seek a second opinion. I don't know if they biopsy tissue from a hysterectomy, but if they do that might show if you have endometriosis.

Your GP could test your hormone levels and see if something is obviously out of sync.

Were you in menopause before the operation?

Endometriosis is estrogen fed - estrogen is growth promoting so we are given progesterone to try to minimise the estrogenic effects. I wonder if fibroids are linked to estrogen, and that causes them to grow. I have a fibroid that needs removing and I know other ladies on here have them as well as endometriosis.

On the GI side of things - When you feel nauseous do you get any stomach pain or bowel pain? Do you feel full?

It is quite possible that you have two things going on - GI and the issue with the adhesions in your pelvis.

Mabes

Xx

[IrisGouldianFinch in reply to Mabes]

Thank you Mabes! The biopsy report said everything was normal, and I have had my hormone levels tested. My GP said the results indicated that I am post menopausal. I never had hot flushes or any symptoms of menopause before and after my hysterectomy.

When I feel nauseous I get slight stomach cramps and I feel a presense in my lower abdomen, like I feel full.

I am finally beginning to feel better today: I've felt ill for six days now. These episodes seem to be getting longer, and that worries me.

[Mabes in reply to IrisGouldianFinch]

My mum never had a hot flush when she had her menopause. I think she was dreading that and surprised to have none. I thought all women had them!

The biopsy provides a snapshot of the sample they have taken, so it is still possible for them to not take a sample from the area that is the problem (so to speak) and create a false negative.

There should also be a report of the actual surgery in your hospital medical file. If you contact the hospital you should be able to apply for a copy of your medical file so that you can get your hands on that and any images that were taken during your surgery. You may have to pay an admin charge for this.

I would definitely continue with any GI referral that you have, as well as continuing to pursue finding out exactly what was going on with your pelvis/bowel and what happened to make your uterus adhered to your bowel.

It helps to exclude what it definitely isn't and that sort of pushes more towards what it is - especially differentiating between gynaecological versus gastrointestinal. If endo and/or adenonyosis are suspected then you really need to see a specialist in endometriosis and not a general gynae. There is a member called Lindle on here, if you look at her profile you'll be able to find out more about how to ensure you see a proper endometriosis specialist, should it come to that.

[IrisGouldianFinch in reply to Mabes]

Thanks very much Mabes! Very helpful information! My doctor told me that the surgeon found I had endometriosis and adenoymyosis too. I spoke to my health centre today and they have referred me to have the test with the camera (I don't know the proper name for it) - it can be done locally and hopefully I wouldn't have to wait long for it. The doctor told me he thinks I have IBS and they can help me manage it. After reading Lindle's posts, I wonder if I can be endometriosis and adenoymyosis still affecting me. I will ask my GP. Thanks again! I'm so happy I found this forum! This has really eased my worries!

[confusedandworried]

Hi, it is possible endo is the culprit but there are other things that could cause your symptoms also?

Was endo seen by your surgeon at the time of your hysterectomy? Do you know if they biopsied your uterus and if so what the results were?

The reason I ask is that I had adenoymyosis and endo for which I underwent a total hysterectomy (ie uterus and cervix removed) for the adeno and excision surgery to remove the endo 10 weeks ago. My surgeon removed my cervix as well as he said the adeno may have spread so leaving my cervix in was likely to result in my symptoms continuing.

For reference one of the symptoms of adeno is nausea. Prior to surgery I was suffering from daily nausea plus other symptoms which can be both endo and/or adeno related (pain, heavy and irregular periods, sciatic pain, stomach cramps, bloating, headaches and feeling like I was carrying a bowling ball around most days).

Adeno is similar to endo (referred to as endo's cousin) but instead affects the muscles of the uterus walls. Unfortunately adeno can be difficult to diagnose. Sometimes adeno may be suspected because of a tender and bulky uterus but not always. Adeno can be localised within the uterus walls and is sometimes therefore easier to see during a hysteroscopy and a biopsy can then be taken to test for adeno. However, adeno is quite often diffused throughout the uterus and in which case the biopsy taken is so small its easy to miss - a bit like finding a needle in the haystack. Quite often adeno is suspected if all other culprits, including fibroids (which have similar symptoms) have been ruled out.

I'm not suggesting that you definitely have adeno that is affecting your cervix but a discussion with your GP or specialist wouldn't harm either.

If your surgeon did identify endometriosis they may not have been removed it all, particularly if they are not a BSGE accredited endo specialist as quite often general gynaecologists lack the skills, training and experience to (a) identify all endo in its many different forms and (b) thoroughly excise it. If this is the case women may continue to experience symptoms after surgery because endo still remains.

Furthermore, it's also possible that endo goes undiagnosed altogether if the surgeon isn't looking for it / hasn't been trained at all to recognise it / only looks at the reproductive organs as most general gynaecologists do. Endo can effect other non-reproductive parts of the body such as the bowel, bladder, peritoneal lining etc and these areas simply are not general gynaecologists concern or speciality.

It does sound like you need further investigation but I think you need to see if you can get a copy of the surgeon report and any photos that may have been taken at the time of surgery and take it from there.

Best wishes, Jo x

[IrisGouldianFinch in reply to confusedandworried]

Thanks Jo!

My doctor told me that the surgeon found I had endometriosis and adenoymyosis too. I wonder if it is affecting me now as I still have my cervix. I'll ask my GP about it.

[confusedandworried in reply to IrisGouldianFinch]

Hi. It might be a good idea to ask your GP to refer you to a BSGE accredited endo centre. In case you didn't know you can be referred to any of the nationwide centres - it doesn't have to be the closest for reference. You can find a centre at the following website by clicking on the tab labelled "BSGE Accredited Centres" then "Endometriosis Centres".

Best wishes, Jo x