Feels like im waiting for a massive storm... - Endometriosis UK

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Feels like im waiting for a massive storm ...

Loulou_92 profile image
12 Replies

Its been just over 5 weeks since my first laparoscopy, and I've healed really well there were no complications with teh sugery but I had managed to bite my lip and needed to keep the oxgyen on for a bit longer after I had come round.

I'm back at university, trying to get back to having a normal life. I havent needed painkillers really for about a month which is good but about 2 weeks ago I started to get this achy tugging pain where I didnt want to feel a pain for ages yet. I called the doctors and they said it could be anything but to keep an idea on it, and its come back but not as bad as it was on that day. So Im not sure what to think to be honest. I do have a hospital appointment on 20th december so I will mention it and hopefully they will be able to tell me what it was, plus how bad things actually are. I mean being "ill" whilst at university is not good and its not making my life easy but I guess at the same time I should be greatful that its not as bad as some people have it, but at the same time Im thinking well what if it is but its kind of dorment at the minute and when I have my period whenever that might be everything will kick off again.

I have been on the pill for nearly 3 months now and I finish it on 28th december and Im worried that either Im not going to have one this month or if because I havent had one for a while it will be another few months til I have one but then what I am I supposed to do til then if they are giving me hormonal treatment, whihc is what Im guessing they are doing at the minute.

If anyone could settle my mind a bit and maybe give me some questions that would be good to ask my consulant on 20th december that would be appricateed hugely

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Loulou_92 profile image
Loulou_92
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12 Replies
abzisfabz profile image
abzisfabz

hiya, i read your blog post and thought i would reply and hopefully give you some answers to ease your mind :)

glad to hear you have healed well after your lap, i had mine in sept and i healed quite quickly too. you are not alone in feeling pain so soon afterwards, it was only a few weeks after mine that mine returned. but i've been told by a few people that it is not uncommon and it takes a lot longer for your insides to heal than your outsides so you are bound to still get the pain, it can take between 10-12 weeks to fully recover inside apparently so i wouldn't worry about that, but it probably is worth mentioning it when you go to the hospital again! is that for a follow up appointment? i was just sent straight back to the care of my gp, no other appointment was made for me which am shocked about.

so yeah i think you should definitely mention it at the hospital but i wouldn't worry too much about it :) i know what you mean about being ill at uni, i'm supposed to be in college but i've had so much time off already because of this and my case isn't as bad as some others either but it's still bad isn't it :(

i've been on the pill since i was 14 (am now 20) but i was told to tri-cycle my pill after my lap so i've just had my first period since the op and i won't sugar coat it, it was horrible. you might be lucky and not get one, but am only telling you this so you know what to expect! mine was really heavy which i've never had before and really painful, so if you do get that don't worry that's normal too after your operation, it's just the way your body is healing.

i think in regards to asking your consultant, just ask how normal it is about the pain you've been having, ask about other treatments you could have so you can live an easier life with the endo, and just ask what to expect over the next few months :)

sorry it's really long, hope this helps and hope you are okay x

Loulou_92 profile image
Loulou_92

Thank you its helped, I was told to do teh same thing with the pill too. The pain is no where near as bad as it was before the operation no where near at all but enough to notice it. My periods are really heavy anyway so Im expecting that. It would of been nice the doctors to of told me the recovery times, only told me the rough time of my stitches coming out which I still have one lot in.

Yes its a follow up at the hospital Im at two different doctors in two different counties because of learning away from home. Which can make this difficult. But you have helped thank you xx

heidi30 profile image
heidi30 in reply toLoulou_92

i had 2nd lap almost 3 wks ago n they found that bladder and bowel were suck together and they also found more endo but didnt say where i also still have pain but not yet as bad as it was before and i honestly dont know what to think..i wasnt told how long recovery would be either .still bleeding and have been for 7 months constantly now had coil fitted in may that hasnt worked and i was on progestrone tablets 3x a day before the op they didnt stop the bleeding or pain either grr.got follow up appt this week am thinking of writing some questions down for the consultant (i feel a bit silly) but i know if i dont i will forget to ask n always wonder , i had my 1st lap in feb this year where they found more endogot rid of it and it came back after only 4 wks so at this point i am wondering what is gonna happen n if it comes back so soon how long will i have to wait to get it sorted again! .

Loulou_92 profile image
Loulou_92

Sorry to hear the amouunt of "hassel" you have been through. I was told as I was still drowsy from the operation that they found some behind my uterus and used heat thepary to remove it but not sure if there was anymore. Today the pain has come back and its bad enough to take painkillers but I dont know whether to have paractomol or cocodimol. As if it gets worse paractomol wont work but at the same time I dont want to take cocodimol. I hope you get some answers this week and its not silly to write them down it helps as they like to go off toopic so you can bring it back to what you want to know and when your happy with the answer you can tick that question off, its a sensible thing to do actually.

heidi30 profile image
heidi30

i wasnt told where they found it this time or how they removed it or how they deal with the bladder and bowel being stuck together .they just said they found adhesions and that bladder/bowel were stuck together and that there was more endo but didnt say where. i guess i will find out on friday.seems to me like it is getting worse. ive heard of them grading endo but theyve never said anything to me but then ive never had a follow up appt before tha last lap i had the consultant was useless and no follow up appt..ive had to apply for dla as i cant cope on a daily basis and have 4 children to look after . if i do actually manage to get to the shops if i cant park right outside i end up just going home again as i cant manage to walk from the car to shop round shop and back again ...many a time i just ended up going home without what i need ! hope you pain eases soon xxx

Loulou_92 profile image
Loulou_92

Yeah Ive heard of the grading thing too, hopefully things get sorted for the both of us. That is bad that they arent telling you anything if things are that bad for you . HOpe you get some answers on friday xx

heidi30 profile image
heidi30 in reply toLoulou_92

thank you .mi guessing that they wait til the follow up appt to tell all as you say u dont really take it all in when uve just woken up from an operation .good luck to you. take care xxxxxxxxxx

VickyW profile image
VickyW

Hope you get some answers and relief at your next appointment. I was told it can take up to 6 months after a lap for your body to recover. I started having pain again 2 weeks after my lap, and although much better than before the lap, it is more wide spread and daily pain.

Try ibuprofen or similar medication for your pains. Of course everyone is different, and for some these are not strong enough. Discuss your worries with your doc at the appointment, and don't let them fob you off. But be open to other therapies, even as simple as gentle daily walking, deep breathing, or even relaxing with a hot water bottle. It's very difficult juggling life whilst having this condition, so it's important to try and get some help from others, and most importantly of all find some time for yourself!

Maybe even discuss staying on the pill longer with your doc. After my lap, I was supposed to be on a special pill for a year (with no periods what so ever). (Though I had to stop this treatment as it didn't work for me) Good luck!

Loulou_92 profile image
Loulou_92

I understand after an operation like ours where they are prodding around its going to take a while to heal inside, its just this pain today is a bit too similar to how it was before the op thats the thing thats worrying me. Yes its no where near as bad but its still there thats the issue. Im open to other treatments as long as it involves me being able to keep things and not cauase the menopause Im not even 20 yet. I have plans like the next person does. Ive tried deep breathing does nothing might try the hot water bottle though havent done that one yet. I have the most amazing boyfriend he is so understanding and supportive and we havent been together for long at all. Yeah finding time for myself is hard when you have deadline in 4 days and your work isnt getting smaller and your in your second year of a degree, but I am away at new year so hopefully Ill be able to have me time then.

Hope your okay and good luck to you too xxx

mixedspice profile image
mixedspice

I'm really sorry to hear you've got this to handle when you're so young and at uni. I'm 40 and have a daughter your age lol. I can really identify with how you describe waiting for a storm...(which doesn't seem to pass!) I had a lap at the end of Sep and I was lucky like you in that the healing was straightforward. Unfortunately, the endo pain has returned. I'm back to see my gynae this week and I am preparing a list of questions, handwritten this time as I have a tendency to get sidetracked. I would like to ask about the best pain relief. How long will it go on? I have just started following a gluten free diet which I hope will help as I don't like taking meds unless absolutely necessary. I really hope your appointment goes well on the 20th. Keep us posted. Most of all, enjoy space and carefree time doing what you fancy over the hols.

hollycat78 profile image
hollycat78

hiya i too felt really bad pains after lap mine was 6 wks after worse now than before lap, have they suggested you try a course of prostap yet the side effects arent too nice tho as it puts u into a mini menopause but the relief from teh endo pain is fantastic, ask your doc about this, im due to see my consultant next wk too to see if they are going to perform a hysterectomy as im not allowed to take the prostap for the next 20 yrs and they need to make me free from pain

Loulou_92 profile image
Loulou_92

They havent offered anything as when I had my first appointment with them it wasnt my doctor I saw because it had been cancelled without them telling me and had to see someone else fter we complained, but i met her before my op and I dont like her already so Ill see how this goes then go from there. Everything has been going on since April this year, but they said it was endo after the op but if thats the real diagonise or not we will find out soon. xx

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