Pain every single day

[NikkiBen]

Hi, I have suffered since my periods started but I had a laparoscopy last year and it was discovered I had endometriosis at the back of the womb albeit dormant. They treated it during surgery. However I'm now suffering pelvic pain every single day - not just while on my period. Is that normal for someone with endo? My GP said it's likely mine has came back/flared up. But this pain every single day is draining me 😢

[CitizenErased]

Sorry you're struggling 😔 Unfortunately many people with endo do suffer every day. When your GP said it's likely that the endo has come back or that it's a flare up, what did they offer you? Anything? It should still be investigated even if they think it's endo again. I know the feeling of being in pain every day. You're not alone! But you shouldn't be just left to deal with the pain with no help from the docs 💜

[NikkiBen in reply to CitizenErased]

The GP gave me a script for Tramadol but I'm finding they aren't helping and actually making me feel down so have stopped taking them. I'm on antidepressants as it is and don't think they were agreeing with that. Otherwise he wanted to put me on the pill but I have one final try at ivf this year so I didn't want to go on anything like that just yet. I had a scan recently due to my pain and irregular bleeding and they said it was clear 😢

[RedCat24]

Sorry to hear your struggling. I'm one of many who suffer with everyday pain - can be copeable or can be severe. I hope your GP has refered for u to be investigated with scans and given u pain relief

[NikkiBen in reply to RedCat24]

They aren't interested at all. I've suffered with horrendous periods and pain since they started ar age 11. After years of issues they gave me an ultrasound (when I was 20) and said it was clear. No offer of anything else or further investigation. I've struggled with unexplained infertility and 2 failed ivf attempts and had to beg and plead for a laparoscopy. They wanted to put me on the pill.... eventually though they caved and endometriosis was found at the back of my womb. But they just sent me on my way with no advice or help.

[RedCat24 in reply to NikkiBen]

I'm so sorry to hear it's so draining the amount of advocating we have to do. I was in the same situation and went to GP in tears ill and not coping I was refered to a BSGE centre iv only just been seen but I'm waiting on a new mri to see what's wat and they want me to try the pill 😫

[NikkiBen in reply to RedCat24]

It's so frustrating. I wish I'd known more and fought harder when younger. They shoved me on the pill at 14 because of it then that didn't help so put me on the injection. I had no periods for years while on that which was amazing but can't help think this has contributed to me being unable to conceive. Been trying for a baby since I was 26 and I'll be 38 this year. They don't do enough investigation. If I hadn't begged for a laparoscopy I still wouldn't know about my endometriosis. Once my final ivf attempt is done I'll be fighting once again for help. No doubt it will end in a hysterectomy or something. Who knows. It's awful how much we have to fight for help when it comes to periods etc x

[RedCat24 in reply to NikkiBen]

Absolutely, iv had pill before, different types and had side effects not had anything for 6 year but because I refused coil I was discharged from local gynae hence going to bsge centre. I had to beg for my first investigation lap but they said negative. I went private for my diagnosis but it's so expensive and can't afford to see him following on, im 33 and he recommended hysterectomy but bsge specialist doesn't want that at my age. It's so conflicting advice and so much underestimated. I wish you all the luck that you manage to get your dream baby x

[NikkiBen in reply to RedCat24]

It's not fair. I really hope you get somewhere. Don't give up. I certainly won't. Aww thank you 😊 fingers crossed. Especially now the fertility clinic now know about my endo... may help with my treatment but who knows x

[Lucie44]

Although many do suffer with daily pain it would still be worth having investigations to check possible alternative causes. Did the GP refer you for an ultrasound or anything? Did they offer stronger pain relief? I'm sorry you're going through this. My pain is daily now after years of having Endo. I'm guessing it's the adhesions causing most of it, but I've had 4 surgeries and now waiting for a hysterectomy due to the deep infiltrating form of Endo. This only affects 5% of cases and needs to be managed by an Endo specialist gynae team. Please ask your gp to refer you to an endometriosis specialist for a proper assessment to determine if you have this. I hope not but better to check. Good luck. X

[NikkiBen in reply to Lucie44]

Thank you. They sent me for an ultrasound and said it was clear but the GP said most endo can't be seen on an ultrasound anyway. They otherwise just sent me on my way with Tramadol and wanted me to go on the pill but as I have one last attempt at ivf I said no. I have had unexplained fertility along with years of struggles with my periods but still had to beg for a laparoscopy. It's since the surgery things have gotten worse for me but they didn't give me any advice or information after they discovered it They just don't seem to care really.

[JOSANDY40]

Sorry to hear this.Probably worth a scan, perhaps a drug to try to shut the Endo down.

Mine was just 10 days a mth but as the yrs went on it became everyday and sometimes OK only 2 days after a period finished. Though the drug Zoladex I took for many yrs I still had pain but reduced but about 5days before the next implant was due the pain would be more elevated. Unfortunately they wouldn't shorten the time between Implants.

[ClaudiaGrace]

Hey Nikki,

Yes sadly it’s a pretty complicated condition and lots of people experience daily pain or periods of daily pain at least. I find that I go through phases where I’m I guess having a flare up and in those times I can be in pretty much constant pain for weeks but when I’m on top of it this isn’t the case. Highly recommend the book heal endo and the lifestyle changes they suggest.

I would definitely see if there is more they can offer you in terms of investigations ideally scans by specialists and medication e.g deinogest which is supposed to suppress the condition. It’s not really good enough if they’ve just said it’s probably that and done nothing else to investigate or treat. Your GP at the very least needs to refer you to gyne, my GP even sent me for scans herself but they weren’t specialist so be cautious with the results if you also see non specialists.

[NikkiBen in reply to ClaudiaGrace]

I have suffered from age 11 when my periods started. They suspected endo and eventually gave me an ultrasound when I was 20 but said it was clear and left me to it again. I've had unexplained infertility and 2 failed attempts at ivf (pregnant 3 times but miscarried each). It was after this I begged for a laparoscopy which they really didn't want to do but I eventually talked them round. It was then they discovered I have endometriosis at the back of my womb. It's since the surgery things are worse. But after surgery they sent me on my way with no advice or information. I have been back to GP with the pain and irregular bleeding and had a further ultrasound and of course they said it's all fine. They want to put me on the pill but as I have one final ivf attempt I said no. Otherwise they aren't interested.

[ClaudiaGrace in reply to NikkiBen]

Nikki I’m so sorry this is awful and it’s so hard when the medical professionals have no answers or don’t seem to care about trying to find any.

Did you have a follow up with the consultant/surgeon after the surgery? It is usual to have a follow up to share this kind of info.

Deingoest isn’t a contraceptive so it might be worth looking in to whether you can take that whilst trying to conceive. You can also try supplements for the pain like NAC which is meant to be anti inflammatory, and serrapeptase which helps with scar tissue after surgery and inflammation.

[Chel91]

Was all the endometriosis excised vs being ablated? Do you have your operative report? Ask your GP for a referral to a specialist Endo center for further excision surgery. It is possible some was missed or ablation was used. Were you ever pain free or had a time of relief after surgery? Seeing an endometriosis specialist privately may be an option also, if you can afford to. A dual NHS / private surgeon may be able to give you a consult and then refer you back to the specialist NHS Endo center he works for too. Wait lists are long, but it would be good to get the ball rolling. All the best to you xx

[NikkiBen in reply to Chel91]

I have just checked the letter and it states they ablated it. That's all. I had maybe 3 or 4 periods that were bearable afterwards but it's just gotten worse and worse each one since and only past 5 or 6 months the pain all the time and irregular bleeding has started. I was sent for an ultrasound because of this and they said it's clear and wanted to put me on the pill. But as I still have a round of ivf to go I refused that. Otherwise they don't seem interested

[Chel91 in reply to NikkiBen]

It needs to be excised not ablated. Ablation can possibly even makes things worse. Ultrasound won't be able to see most endo usually. You need to go back to your GP and ask to be referred to a specialist endo center for more surgery. You could also (I've heard) look into booking and pay for an appt consult with a dual private / NHS endo surgery who can write the referral for you. Unfortunately, unless you want to pay privately for the surgery there isn't many other options. What location are you in? Maybe you can make a new post about which surgeons or endo centers are the best near you to see via PMs. I know it's frustrating and infuriating, but i think pushing is the only way if thats the route you want to go down. Otherwise they will just give hormone medications and pain meds forever. I'm sorry xx

[ClaudiaGrace in reply to NikkiBen]

I am more than happy to be corrected on this but don’t want you to panic about ablation if it’s not necessary. I have read quite a few scientific papers on this and from my understanding it isn’t as clear cut as excision being better. The NICE guidelines for endo treatment also only say ‘consider excision over ablation’ and I was told by a very specialist consultant that it isn’t as simple as either or and that in reality most surgeons use a combination of the two. I also believe that for surface level endo as it sounds like you had ablation tends to be more appropriate.

Another option is to pay to see a specialist sonographer, I can send you the name of the guy who I saw in London if helpful. A lot of sonographers are not appropriately trained and don’t detect endo with anywhere near as much accuracy. Having said this if you have surface level endo still this likely won’t show up still.