A bit in the dark

I had my first lap 10 days ago and was told after surgery that it was severe endometriosis . I had lots burnt off (both left and right sides) and asked if I had finished having my family as a hysterectomy would be the suggested next step if the Mirena doesn't help. I don't see the consultant again until early next year so I feel a bit in the dark. I have a physically demanding job and am due back at work next week however I still have quite painful cramping and it hurts if I stretch or move too much. I've started to move around more but find even the smallest things make me out of breath and shattered. Is this normal? . Shouldit still be hurting after 10 days? Im just taking paracetamol and ibuprofen now although did have nefropam which was surprisingly useless. I'm also in two minds about going back to work next week because I don't know how I will manage all day.

Any insight or advice would be lovely. TIA.

12 Replies

  • Marypopps@

    I think if you are still in that much pain ask the dr for a note to not work for 4_6 weeks.

    I'm not sure the extent of your surgery but I know i was told no heavy lifting for a month


    It took about three or four months before a lot of relief was found and in the beginning heavy bleeding but all stopped and she's going to use it into menopause

    My daughter has had good look with the

  • We're you treated at a bgse centre as they usually only suggest a hysterectomy if it's adeymosis not endo. X

  • No just through my hospital but the consultant seems good. To be honest it was not long after the op when he spoke to me so I'm glad my hubby was there to take it all in. He may mean long term for a hysterectomy but I guess I won't know until I see him next year. There is family history of endometriosis.

    Thanks for your replies.

  • Endometriosis should be completely excised not just ablation the surface. If just ablation performed, some snare left behind and can still cause problems. Did you get a letter from the consultant regarding the surgery?

  • Nope. Just a an appointment in the post for next year. My discharge notes were very brief. I am waiting for his secretary to ring back as hopefully she will be able to shed some light. He did say I had lots of old scar tissue or adhesions (something like that) that couldn't be removed.

  • If you do have severe endo it can't be treated properly with ablation. Even though your gynae seems good, dealing with endo is a highly specialised surgery and not all gynae are qualified to do it. If you google BSGE centre you should be able to find a list of hospitals that have specialised endometriosis services - these surgeons will actually cut the endo out rather than just burning the visible sections. Your GP can refer you.

    Although traditionally hysterectomy was offered to women with endo, it's not considered to be a suitable treatment any more except in very specific circumstances. There are also lots and lots of other drug treatments as well as Mirena that should be tried before you start thinking about a hysterectomy - it's a major, irreversible surgery and removing your uterus will only help if you have adenomyosis.

    I had a lap back in january and they didn't remove any of my endo and I was taking ibuprofen and co-codamol for a good month afterwards for the post surgery pain. Although it's keyhole, any abdominal surgery is invasive and traumatic and 10 days really isn't very long for recovery.

    Hope you feel better soon.

  • Thank you. I will look into it. I'm only 35 so don't fancy the menopause etc just yet. I just hope the work I've had done this time eases the pain and extreme tiredness I have had for years. I didn't even know that tiredness was a symptom until recently. I'm currently hugging my hot water bottle for some kind of relief :)

  • Hi there. Do keep resting and I'd get at least another week off.

    As others have said you really need to transfer to a BSGE centre to get the right care. A hyster is only useful for adenomyosis which is when endo has basically affected uterus muscle. Otherwise it's a waste of time basically as wont solve pain.

    A General gynae who says they are endo specialist often don't know enough about proper treatment. I had my hyster & ovaries removed in feb2015 by General gynae before I knew about BSGE centres and am now in worse pain and still have endo.

    So go to GP and ask for referral to BSGE centre. You can look them up on their website - take a look at Lindles post for treatment pathway.

    The scar tissue/adhesions are probably from endo that has changed over time. A good surgeon can clear them out at the same time as excision of endo.

    Exhaustion is a side effect of the anaesthetic but also is a symptom of endo so hard to know which is causing it at the minute as you had ablation endo is certainly still there but anaesthetic tends to affect you for a while after the surgery - very rough rule of thumb is every hour you were under will take a week to recover from

    Get your theatre report from surgeon and I'd personally say just take that to appt at BSGE and don't bother returning to this guy as sounds like you need to go to specialist centre.

  • Thank you for all the comments. I'm new to this endometriosis lark, other than my sister having it and having had treatment herself. It's nice for me (and her) to have this extra info. I'd never heard of a BSGE either so had to google it.

    I remember my gynaecologist saying there was a huge block of endo on the left with all the old scar tissue, and webbing on the right and that for now my tubes and ovary look ok. Although he mentioned something had been blocked. It's bizarre cos the whole reason I went to the docs is because of pain I have on my right hand side. It's really sore there today too. So confusing.

    Thanks again ladies X

  • Definitely get a bsge referral! You need to be seen by a specialist. General gynaecologists do not have the knowledge nor the skills to treat you unfortunately. As others have said, the fact that he used ablation is a real concern. It's like taking off the top of a weed, the rest is left behind. It needs to be throughly excised instead or it will come back worse than before.

  • I agree with Cookie. Endo merely 'burned' off will return, and non-Specialist gynaes rarely know how to find, identify or thoroughly remove all the different types of Endo - they don't have the specialised surgical skills.

    Read the posts on here by Lindle, and ask your GP to refer you to a BSGE Centre as Lindle - and others above and elsewhere on here - specifies. 'Endo UK' (who host this site - link to their website at the top of the page) have details about this route, and BSGE centres, on their site - although you have to search for it all , and they don't promote it on here as much as I think they should. It is worth knowing absolutely all the detail and opstions before considering a hysterectomy.

    Take care.

  • Ps there's a post by Lindle - about exactly what we are talking about - on today's list of posts, about 6 below your post - there's a picture of her. check it out,

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