What do I do now? : Hi all, I had a... - Endometriosis UK

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What do I do now?

Donna_24 profile image
4 Replies

Hi all,

I had a laparoscopy/hysteroscopy yesterday and I don't remember much of what was said but they advised the removed a polyp (which they told me previously polyps don't cause the symptoms I have) but they didn't find any endometriosis - which I think the surgeon was fairly sure he would find. They said something about finding scarring? And mentioned something about my bowel. Think I was too fuzzy headed to take it in.

What do I do now?

Half the time I can't move for pain?

I need to go back in 3mths as they said they want to refer me for IVF.

Any advice would be appreciated.

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Donna_24
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luthien profile image
luthien

With the hysteroscopy did they take any biopsies?

The scarring could be from previous problems / infection.

The not finding endo should mean if you still have symptoms in a few months they should investigate further to find what else could be causing the pain. Your results will be sent to your GP so you can call in a few weeks and find out what the results were or book a check up appointment with your specialist to discuss the results.

For now you'll need to rest, you'll be in pain for about a week and then it should start to get easier to move around, you will still have pain but it will be lessening. Try to stay active and up and about but just take it easy and slow. Listen to your body, over the counter painkillers are fine but read the instructions as some should only be taken for a few days. If you need to rest stay on the sofa rather than bed as you'll keep your body clock at it's normal times. Lots of hot water bottles and sofa days required for recovery!

You should have a check up after a few weeks to see how the stitches are healing / any other op related problems. Then a check up as you said in three months, but that would be a bit soon to consider being a candidate for IVF as three to four months is about the time it takes for some women to fully recover from a lap.

IVF? I'm guessing you're planning for a child? Bear in mind depending on where you are if in the UK and NHS they will only provide free IVF for a certain number of cycles. Planning for and having children isn't usually a problem with pelvic pain but the pain can return or become worse after the birth so that's something to consider when planning; investigate and treat first or postpone and have a child first then investigate.

Wishing you a quick recovery, just rest and take it easy x

Donna_24 profile image
Donna_24 in reply to luthien

Thank you for the reply farahziya,

Sorry for the late response (issue with my app)

The did remove a polyp, which I assume will be tested?

I'm just left feeling like I don't have any answers to what's causing the pain and fatigue? My periods are irregular and at times I'm in so much pain I can't move (that is at any point in my cycle) and quite often I have sudden and intense cramps that just seem to come from nowhere?

My ultrasound showed an irregular thicken endometrial lining, which I'm not really sure what that means? I do struggle going to the loo (not being able to go or experiencing cramps)

When the first mention that it could be endometriosis , I really didn't understand what it was, so I did my homework and use it a dairy/tracker and my symptoms really seem to correspond with endometriosis (more so than other potential diagnosis or suggestions so far)

Myself and my husband would love to have a child but I've never fallen pregnant.

Donna x

luthien profile image
luthien in reply to Donna_24

Any tissue they remove they usually do test, but it depends on whether they feel it needs further investigation.

It may be worth going back to your specialist when you've recovered or when you have your check up - usually about 2 weeks after op (to check recovery), the final one should be 3 months after op (fully recovered), and ask all the questions you have - make a list. In the mean time keep your diary going of pain / symptoms, perhaps rate the pain on a scale of 1 to 5 and try to say where it is. At the moment you'll be recovering so all your symptoms may be a bit off, give that a few months before taking it as your norm.

Are you in contact / seeing a fertility clinic or specialist? That may be your next step especially considering the scarring. It may be a good idea to find and get in touch with one in a few months yourself (looks more pro-active), have a chat and see what they think. On the fertility side, they'll look at your uterine lining and your ovaries, including fallopian tubes. It may be an idea to get your partner checked out too; most infertility problems come from the male and you'd want to know that before being put on the IVF list.

Donna_24 profile image
Donna_24

Hi

I have an update. I went see the consultant, he advised I need a further laparoscopy as they couldn't do everything they need to, as I was in a day hospital and the surgeon didn't have the support needed. He said one of my ovaries is stuck to my womb (I think) so they still think it my be endometriosis, and mentioned it could be Adenomyosis. And there is potentially something going on with my bowel. He also said that it could be a few different conditions, due to the symptoms.

I'm due to go back on 6wks for IVF assessment.

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