Had a lap on 30th of dec and treated for endo but in loads of pain

[Princessm]

Hiya I had a lap on the 30th of dec and everything was going okay. I was treated for endo and was back to work straight away. Now I'm started to spot randomly and I'm in so much pain. (Feel like I never had the op done) they told me it will come back because of my age but surely not so soon? Did this happen to anyone else??

[wp22]

My experience seems to be that when they do a lap they take out what they can see or take some of it out, the bit that they are capable of and then the rest of the endo that's left behind, because they poke and prod around I think it disturbs the endo left behind and it becomes more active for about 3 months before it settles down. I reckon that's why they say it takes 3 months for things to settle, they know what they have left behind then tell us it takes 3 months to settle and how often do we hear that it has all gone when they know only too well what they have left behind. Then we are still left in pain wondering what is it. If we didn't have endo left behind after lap there would only be healing pain from the op, which is totally a different pain than that unmistakable endo pain. It's a terrible journey that they make us go through only through their lack of skills, expertise and lack of dedication from most gyneacologists. Basically if we didn't have endo we wouldn't have any pain. I am sorry for your ongoing pain. X

[Princessm in reply to wp22]

I was never told it would take three months to settle they told me I could go straight back to work knowing I worked in a care home with lots of manual handling. I feel like I haven't been told anything by doctors. I wasn't told it was like a spider web or weeds I was told it was little spots. I was told it would come back because of my age and that's mall I was told. My op was on a cabin type thing and 2 hours after I was at home in floods of tears in pain we asked to see the surgeon and they said he was busy we couldn't. We asked to see the photos and they didn't we asked if it was all removed the nurses said they didn't know and them said well you have weed now you can go ): xx

[Hidden]

Unfortunately I am not able to be of help unless I know the treatment you are on. Please respond with your exact medication.

[Princessm in reply to Hidden]

Hiya I had endo in my uterosacral ligaments. It was removed and that's it. They never said anything other than that. I talke microgynon 30 which I haven't had my break from as of yet. I hate having to take my pain killers but when I do I have 30/500 co-codimal and it doesn't work I'm still in loads of pain xx

[Evezy]

I'm sorry to say that mine came back very soon after. I went back to my consultant after 3 months with all my pains back. I actually wondered if I'd had the op done! I was told, and understand that my consultant was very reluctant to review me until I was 6 months post op as he wanted things to settle down especially as I had a lot of work done.

I was back by month 5 as I couldn't cope with it any longer, especially as I was getting different types of pains and different places than before.

I'm so sorry that is couldn't give you a more positive reply.

[Bryonybear18]

Hello,

I'm in a similar situation, I saw my Specialist last Tuesday for my follow up appointment (I had my lap on the 20th of Sep) and because I'm still in pain basically she said my endo is still there.

Endo is like a weed, if you chop off the head there's still the roots that you cant see causing the pain!

I've been told that I have 5 months to stop my periods by taking the microgynon tabs back to back, if that doesn't stop the pain then I have to have another op where they go inside my ovaries and dig out the roots. Apparently if all else fails then its not endo causing my pain they will have to investigate other problems ect.

xxx

[Scooteeder]

I absolutely agree with "wp22", below. I have Endometriosis, and am booked in for my FOURTH Lap. Three, so far, have failed to completely rid me of the misery of Endo.

Might I ask you to think about a few things, in light of your experience...

1. Have you EVER been fully told EXACTLY where ALL of your Endo is/was situated?

2. Do you know for DEFINITE what stage of Endo it is?

3. Do you know what KIND of Endo (i.e. is it superficial, or deep infiltrating Endo)?

4. Have you ever left appointments with your Doctor(s) feeling that you know little more then you did when you first turned up?

5. Do you find it easy to talk openly and frankly with your Doctor(s)?

6. Do you ever get the feeling that there may be MORE in your Endo medical notes than your Doctor(s) is/are letting on?

7. Would you feel comfortable asking to SEE all your notes, and would your Doctor(s) be comfortable letting you?

8. Have you ever had appointments with your Doctor(s) where you got the impression that all was not well, despite the fact that THEY said it was (e.f. THEY tell you ALL the Endo was removed during a Lap, but then in the same conversation KEEP warning you it can return, or SLYLY tell you the operation was complicated so they cannot be 100% sure the Endo is not still there ?

If you can answer YES to one or more of these questions, then I would suggest that you seriously consider what "wp22" has said. I think this person is SPOT ON! I, too, think that because of lack of expertise, or because of fear of risks, some surgeons just do NOT fully remove Endo. THEY know this, and try to cover it up, by telling us that it MAY return, or whatever. I'm not saying ALL Doctors - some are very helpful, very forthright, and do whatever they can to work with you - but some are not.

In my experience, for what that's worth, a woman KNOWS HER OWN BODY. besides, the longer you live with Endo, the more you get to recognise its signs and symptoms. So... TRUST YOUR INSTINCTS.If something is bothering, or concerning, you it is doing so FOR A REASON. That reason NEEDS to be checked out.

Women with Endo are given little enough support as it is. We are often overlooked, treated as "malingerers", "hypochondriacs" or "crazy people". After all, nobody can SEE the illness, so many people refuse to believe we have it!. Doctors often want to get us to "go away", because our chronic illness is hard to treat, and takes up time. So they force us to accept the "cop out" option - the Pill, or Mirena - things that MASK symptoms, not eradicating the illness. Employers add stress, wanting us back at work ASAP, begrudging time off for illness or medical appointments, making threats, putting people on report. Even friends and family may be ignorant, not understanding or knowing enough about the disease.

On top of that, no woman needs to feel that she does not even know "the full story". That she is unaware as to whether her Endo was fully removed during a lap, or not. If you feel worried that it HAS returned, don't ever feel stupid. Your fears are there for a genuine reason - because you want to get well. Get your concerns checked out.

I really Do wish you all the best, and hope that you see an improvement in your symptoms. Endo is an awful illness, and robs women of quality lives. I wish that EVERY woman out there who has it, eventually could find a CURE.

Take care + all the best.

Elaine.

P.S. If you ever want to contact me for a moan, to share experiences or advice, you could e-mail [e-mail]. I also blog about my experiences. You can find me on Facebook facebook.com/elaine.ellis.5..., or at my website "A Butterfly Mind" 19911324335657460.weebly.com

Good luck!

[daffodil in reply to Scooteeder]

Vey well said thanks! Just wanted to add that you are entitled to see and have photocopi es of all NHS letters and reports from specialists.I regularly gather letters from specialists ,as need them for my DLA claims as evidence.It was through doing this and getting my first lap report from age of 18yrs that I discovered that I had endo and cysts,but had been dismissed as suffering from stress and just told it was a hormoal imbalance that would be solved by he pill.I was not diagnosed with endo till age 26yrs and by then it had got serious.They cant refuse ( freedom of information act),but you may have to pay for photocopying.

[Annetta25 in reply to daffodil]

Do you receive dla now?

[daffodil in reply to Annetta25]

Yes I do, but on basis of my other health issues and diasabilities - have Me/Fibromyalgia and am on crutches/wheelchair due to Meningitis in 2008.New benefit is called PIP( Personal Independence Payment) so Dla does not exist for new claimants now.It is very much more stringent and I think to claim for endo you would need to be bedbound or have other health issues as well. Very happy to help anyone trying to claim Pip orESA as have had 12 yrs of filling out these forms and going for medicals!

Feel free to PM me if can help - don't want t discuss personal issues online.I can give you my private email if you PM me.

[Princessm in reply to Scooteeder]

Thanks the answer to the questions are.

1. I have in a letter saying it was a spot on uterosacral ligaments don't know how much

2. Was never told this

3. Was never told this

4. Yes

5. Yes although it was a bit awkward at first

6. Yes. My doctor has told me nothing about it haven't seen or heard from him since the referral. The surgeon wouldn't walk to me ad it was lunch time and they wanted me to go home straight after.

7. I would be comfortable askin to see my notes although I don't feel he would be as keen I found out from a differnt doctor I once had a womb infection although mine never said that to me.

8. I haven't seen te doctor since although before I went in for my op they kept telling me that because I was so young it will come back again and he described it as a few dots. When I met a ex nurse who has suffered it 11 times she told me it probably will come back and said t wasn't dots of womb at all that it grows like a spider web snd can attach to everything. Before the op they said they probably wouldn't find anything. I feel like I haven't been given the full story by the fact I know very little about what happened and that the pain is now back in the left side of my abdo same as before but the pain is also in my right hip a tops of my legs xx

[Hidden]

I agree with all of he above. I just wanted to echo what daffodil said about getting a copy of your hospital notes.

Have a look on this website for information on the process

nhs.uk/chq/pages/1309.aspx?...

Best wishes.

Barbara x

[Princessm]

Thanks for all the help and support i went to the doctors today didn't see my normal doctor had a lady insetead. She is referring me to the hospital as she feels it has come back again. She asked how much I new about what happened and I said I didn't ae told me all ligaments that hold the uterus up was covered in endo and that I has a sticky scab type thig inside me that they removed also