Return of pain

[JJS09]

Hope everyone is well,

I had a laparoscopy in October in which adhesions were found but no diagnosis of endo there was also no investigation into why I had these adhesions as I’ve had no previous surgeries prior to this. I was pain free up until January, it was the best time I stated to feel like my old self.

In January the pain started to come back but it was manageable. I did decide to go to my GP straight away as I didn’t want to end up in the same state I was before my operation.

It’s been progressively getting worse and I’m now in the position where I can’t walk when I have pain and it’s pretty much there all the time. In March I had an ultrasound whilst talking the technician I mentioned the surgeon found adhesions during my laparoscopy and she said something they found endometriosis’ to which I replied no they just said I had adhesions. This has happened to me a lot since my operation when I’ve spoken to NHS staff.

I’m not sure what to thinks and with the pain I am in now I don’t know where to go from here. I have been referred back to the gynaecologist as it’s under a year since my operation.

Does anyone have any advice on what I should do? And also on how to cope with the pain as pain relief is not even touching the sides?

Thank you in advance for any reply’s, stay safe ☺️

[pinkfairydust10]

I don’t have any advice I am afraid but all I can say is I am in the same boat. I have had lots of laps. Some saying they have found endo in different places and in some laps saying they didn’t find anything. My last lap was clear. But same as you my pain is slowly creeping back to unbearable. I am sat here tonight in so much pain. Want to send love and hugs and say you are not alone x

[MirelaMiky]

I have the same problem...i had the surgery in July, they found adhesions but also endo. I was fine and felt like a normal human being for about few weeks but then i started to have pain, since then i cannot even sit up for more than 2-3 hr or walk, i'm reducing in eating only 1 time a day because the eating is causing me even more pain and since the surgery my belly is been like 7-8 months pregnant ...it doesn't matter if i eat or not...i cannot even wear normal clothes. I was due to see the same doctor that put me forward for the surgery last year but was postpone because of the virus and now they didn't even gave me a new date yet...im a complete loss as well. I suspect that i might have adhesions again ...and perhaps your pain it might be as well because of that.

[MirelaMiky]

Don't have if helps but i'm also planning to have some physiotherapy sessions while i;m waiting for the appointment....i heard that it might help with the pain.

[JJS09 in reply to MirelaMiky]

Thank you for your reply, I have another gyne appointment in July so I’m hoping that will be able to go ahead, I will look into the physiotherapy to see if that will help... I’m just at a loss I don’t really want to have another operation but considering during my first they didn’t do any investigation I feel like another will be necessary 😭

[Lofty1589]

Was your lap done by a general gynaecologist or one with a specialist interest in Endo?

[JJS09 in reply to Lofty1589]

General gynaecologist at the time I didn’t know about specialists in my area or how to get referred to them, now that they stated no endo was found I’m not sure how I would be able to get referred to an endo specialist as they gynaecologist I’m seeing in July is the who did my operation

[Lofty1589 in reply to JJS09]

Push for it as much as you can. My lap last June was meant to be done by my now ex consultant but on the day, about an hour before I went down, I was told it was someone else - a general gynae. Nothing was found although my Adeno was confirmed and the reason that consultant is now my ex-consultant is because she refused to acknowledge anything being wrong because nothing was seen in the lap. I’m now waiting to be seen by Mr Whitlow who is like gold dust and I’ll be pushing for another lap. Any pelvic pain outside your typical cycle - or severe pain during - is not normal and should be investigated.

Please please please, keep pushing. Request a second opinion from someone else. Emphasise how badly it’s affecting your mental health and day to day life.

Good luck xx

[JJS09 in reply to Lofty1589]

I’m really sorry that happened to you I feel like no matter what we’re never believed, did you request a new consultant from your GP? xx

[Lofty1589 in reply to JJS09]

I had to fight from 13 years old to be put on the pill and the GP I was at then wouldn’t let me until I was 18 - it’s been a rough journey, that’s for sure. I told my ex-consultant I wanted another opinion and made it very clear. I’ve also put in a complaint about her which I think helped things. I’ve not had to go back to the GP to ask for another referral because I wasn’t discharged from gynae. If you aren’t discharged from them, you have the right to request to be seen by someone else.

[Amywoodx]

hi i'm also currently experiencing the same thing. they found an omental adhesion to my abdominal wall and no endometriosis. i've never had previous surgery either.

around 3 months before my laparoscopy i was beginning to feel a lot better but i went for it anyway as i still wanted to know what was wrong with me.

so i had my lap in September and recently i feel like i've taken a massive leap backwards and i'm back at square one in terms of my pain. i'm seriously afraid that another adhesion is forming, it feels like a wriggling uncomfortable sensation around my bellybutton area and on the right side of my lower abdomen, lots of bloating, gas pain and constipation. constantly feel like i need to go to the toilet but nothing.

it started after 3 weeks after my laparoscopy but has got worse since then. at first it was my usual morning pain and now it's constant. i wish i never step foot in the hospital now as i feel like my lap made things worse.

how are you feeling now?

[JJS09 in reply to Amywoodx]

Hey I’m sorry for the delay in reply I deleted this app a few months ago as I felt totally defeated by everything.

I’m sorry your pain has gotten worse, I hope your able to get more answers.

My pain has not been good and certain symptoms have gotten way worse than ever like my bladder symptoms, at first I would just get a cramp pain when using the toilet for a number 1, where as now When I have flare ups I completely loose function in my bladder and last time I did pass blood which was quite scary.

Unfortunately my gynaecologist ignored me whenever I mentioned symptoms with my bladder and discharged me even with the pain the way it was and the worsening of other symptoms.

I have gone back to my GP but as my gynaecologist has stated they can’t do anything I’m left in limbo as I fully feel like all of these symptoms stem from my period, the bladder, constipation, bloating, unbearable pain where I can not walk or even get out of bed when it’s at it’s worse. No one seems to believe me and I’m starting to feel like it is a loosing battle. I did recently price up going private but I do not have that kind of disposable income.

But don’t let my story get you down. I’m just not in a good place with it but 🤞🏻 you can get some real help

Hope your feeling okay? xx