Endometriosis in the uterosacral ligaments and excision

[Tryx]

Hi

Has anyone had Endometriosis in the uterosacral ligaments and had it removed?if so how long was recovery and what pain was like after & chances of coming back,

[Nicolahunny]

Hi I had aheadions on uteralsacral ligaments and endo in my womb the only thing that I found sore was the gas pain I drank peppermint tea to help ease it make sure u take pain relief regularly endometriosis can usually come back after a year of having surgery xx

[Tryx in reply to Nicolahunny]

Hi! Thanks for the reply, I really appreciate it. I didn't really have gas pain as such just felt uncomfortable with the bloating and finding comfy clothing. I'm still getting pelvic pain and pain below the stomach and down below but unsure whether the mirena coil that I had fitted is the cause or the endo excision.

[Nicolahunny in reply to Tryx]

Sometimes can take a few weeks for mirena coil to take affect hopefully Ul see some difference one mirena takes affect xx

[Sprinkles86]

Hi Tryx I had severe endo on my left side and on uterosacral ligaments and masses of adhesions to boot! I had these excised in December and it did take me about 3-4 weeks to recover and I was in hospital for 2 nights. My surgeon said its the worst case he has seen for a while though so hopefully yours is not as extensive? My whole left side was all stuck together, ovary was wrapped in my bowel, bit of a mess really! The good news is that 7 months post surgery I feel like a different person, it has really changed my life so any pain will be well worth it as Nicolahunny said the gas pain can be a little intense but gets a lot better after 24 hours or so xx

[Tryx in reply to Sprinkles86]

Hi thanks so much for your reply, I really appreciate it. I'm just over three weeks post surgery at the moment and still experiencing lower pelvic pain and below the stomach and down below but I've had a mirena coil fitted so unsure if that is causing problems. I never really had gas pains tbh just uncomfortable and difficult to find clothes that were comfy. I was also kept for two nights at hospital. Finding recovery to be quite exhausting and occupational health at work who were very nice and understanding in my first appointment pre surgery were rather rude last week when I rang (I missed an appointment) and was like that I shouldn't be taking so long off work etc and was quite an upsetting experience. Unsure whether it was an off day for them but my sick note runs out today and I don't feel 100% ready to work full time.

[Sprinkles86 in reply to Tryx]

That's so annoying that they were rude to you, most people think of a laparoscopy as minor surgery but this really is not! Go back to your GP if you do not feel 100% fit to return to work, take as long as you need and don't let an ignorant occupational health worker make you feel pressured to come back as this could do some serious harm if you are not fully recovered. Everyone is different, I was back on my feet after 4 weeks going about my routine but I still had waterworks problems and some pain so I did stay off work for about 6 weeks altogether. Be kind to yourself and take it easy, I found I needed time to recover mentally as well as physically xx

[Tryx in reply to Sprinkles86]

Thank you. I have spoken to the drs and got a further week off and currently on tramadol which will hopefully help

[pinkypop in reply to Sprinkles86]

hi can i know your surgeon's name

[Sprinkles86 in reply to pinkypop]

I've sent you a message pinkypop xx

[Tryx in reply to pinkypop]

Hi I don't think we can do that in this forum. It was at the rvi in the north east though

[GrittyReads]

Hi,

I can't speak from personal experience, but take a look at the 'Related Posts' list at the top of the right-hand side of this page. I'm sure some of these posts will lead you to others who can help.

Also, are you being treated in a 'Specialist Endometriosis Centre'? They have the best gynaecologists who are specifically trained to search for, recognise and surgically remove 'endo' in all it's hiding places, different forms and sensitive areas. General gynaes are not so specialised in this work. Search on here, or ... phone / email 'Endo UK' (who 'host' this site) and ask them for details.

Hope you get some answers, take care.

[Tryx in reply to GrittyReads]

Hi thanks so much for your reply. I've had a look at it appears that I was treated at a specialist centre at my local hospital.

[Scooteeder]

Hi Tryx,

I hope that I may be able to help a bit, and provide you with some useful information in my answer.

I have a diagnosis of Endo. In my case, this was a particularly nasty form of Endo - Deep Infiltrating Endometriosis. This automatically makes it Stage 4 Endo. My Endo was both superficial, and deep. It was located in and around the following places - Pouch of Douglas, Utero-Sacral Ligaments, Ureters, Bowel. I ended up having 4 surgeries.

My first surgery was done by a basic Gynae who had clearly very little knowledge of Endo. This surgery was admittedly a disaster, because the Gynae missed my Deep Endo altogether. Instead, they just lasered superficial Endo away (doing damage in the process). My Deep Endo was left hidden beneath a load of scarring on my Utero-Sacral Ligament.

It is important to understand that Endo in the Utero-Sacral Ligaments is often Deep Endo. This sort of Endo CANNOT be treated by laser removal; it has to be EXCISED (cut out). This can only be done by a surgeon who has considerable skill and experience, so it is a good idea to get referred to a specialist (if you are not already under one). See the BSGE website for a list of accredited specialist centres -

bsge.org.uk (Click on home page link saying Endometriosis Centres).

My second surgery was under a specialist centre (I looked one up online nearest to my home area). I had a lap to confirm the exact location of my Deep Infiltrating Endo. Following this, I had a third surgery in which the Deep Endo was excised. This can still be done as a lap surgery, so you still only have small incisions. However, because it is a more complex surgery, and takes longer for the surgeon to perform, healing afterwards can be a slower process than after laser treatment of superficial Endo. You should be aware that the surgeon has to CUT INTO your ligaments to remove the Endo. Therefore, there will be tenderness and some weakness of your abdominal muscles afterwards. In my case, it took about 6 weeks for this to subside. During that time you are advised to rest, and not to do things like heavy lifting, driving or lots of walking about. Your abdomen can feel pretty painful if you over-exert yourself - so its advisable to make sure you have somebody around who can help with things like housework, shopping, or to act as your "chauffeur" until your incisions are healed. Also, taking time off work or study is necessary to allow for healing. Make sure you let your place of work or study know in advance, and it's a good idea to take the full 6 weeks off. You may need longer (depending on how you feel), and if so, seek advice from your G.P. Because it is a lap surgery, there will be the usual bloating and pain, caused by the gas that they pump into your abdomen - this generally subsides within about the same time as for laser surgery (in my case about a week). I was discharged from Hospital on painkillers, so this helped with the recovery. You are also advised to contact the Hospital, or your G.P., if you have any concerns about your surgery or recovery. Most Hospitals provide information leaflets about the surgery and recovery - it is also wise to ask questions before you accept any form of treatment.

My 4th surgery was another lap, to trim back adhesions. Nothing like so major as the previous!

Now, please don't think that it's necessary to have 4 surgeries if you get Deep Endo. If you are under a competent Gynae, they should be able to treat it pretty quickly. That is why I advise seeking out a specialist centre. A specialist will know how to treat this kind of Endo. You may well have an MRI scan to locate it, followed by surgery (which could mean only one op, if they get it right).

Please remember that every woman's experience of Endo is different, as is their pain, because people have different pain tolerance levels. However, Endo in/on the Utero-Sacral Ligaments is likely to cause some symptoms that most women could experience. Because it is in the area of the URETERS, these symptoms may be bladder-related. This type of Endo can put pressure on the Ureters, leading to pain when passing urine, kidney pain if urine backs up, bladder pain or pressure and feeling full - you may feel like you need to pee a lot! You may also experience other more regular Endo related symptoms such as painful and heavy periods, cramping, pelvic pain, pain in the lower back, or pain when having sex. Symptoms may be temporarily relieved by taking painkillers, or by use of hormone treatments such as the Pill, the Mirena, or drugs like Depo-Provera, Zoladex (etc.). However, please do note that these treatments only MASK SYMPTOMS - they DO NOT remove Endometriosis. Endo is best treated by surgical removal.

Finally, I would have to say that it's difficult to know if Endo will return following surgery. My feeling is that - if it is ALL correctly and fully removed - then it should most likely not return. That is why it is SO important to make sure you are under the care of a competent specialist. If a surgeon accidentally misses a patch of Endo, and leaves Endo in your body following surgery, it is pretty obvious that your symptoms WILL return!

Hoping that this helps. By the way, sorry for the link above not turning blue - it DOES work. Just type BSGE centres into a search engine and you should find what you are looking for.

Best wishes, E. x

[Tryx in reply to Scooteeder]

Hi E!

Thank you so much for your help, I really appreciate it. I've been diagnosed with endometriosis (possible) a few months back which was a relief after being fobbed off by DR's for over 2 years saying I have water infections. The things you have mentioned I have been experiencing and it all makes sense now. I had my lap and the removal done 4 weeks this Friday but still struggling and suffering the same symptoms. I'm on tramadol at the moment as codiene wasn't helping much. I think it was a bsge centre that I was treated at and I assume it was excised. I understand what you mean about the removal etc but I was told that endometriosis has no cure and that even surgery is a temporary fix? It's all confusing!

As for the mirena, I felt as though it had moved as I had sharp stabbing pains and after it uncomfortable kinda like a tampon inserted incorrectly and I went to get it checked by the dr but she hada feel and said it felt ok and too keep an eye on it. It's early days I guess but I've heard mixed reviews so I'll just wait and see I guess. Thanks so much again! xx

[Scooteeder]

Apologies for missing out this info...

I note you had a Mirena fitted. I have had one in the past (personally, I did not like, or tolerate it).

The Mirena can take some getting used to. Because it is a hormonal treatment device, please remember there may be some side-effects. Some women do find that after having the Mirena fitted they experience bloating, cramping and pelvic pain. This should settle after a few weeks, but as I said, it can take time to get used to the Mirena.

Occasionally, the Mirena can slip, or dislodge itself. In my case, this happened. If it does, you may experience a sharp, tugging/puling sort of pain and it will be quite noticeable to you that the Mirena has moved. Seek advice if this is the case (either phone your G.P. or the Hospital where you had your surgery).

For more on the Mirena, and its side-effects, see...

drugwatch.com/mirena/

Best wishes, E. x

[hayleys900]

Hi TryX I had endo removed from my left uterosacal ligament area two weeks ago. Before the lap my pain was extremely severe and some days I was struggling to walk. Two weeks on from the surgery I still have pain in the left hand side, I am hoping this will settle however I am thankful it is not as severe as before the surgery. I am not sure if the pain will go but I really hope so. I to had a more na coil fitted as it was recommended by the consultant. I have another week off work, but if I am not feeling 100% it is best to be signed off for a little bit longer. Have previous experience of going back to work to early from a lap and ended up really ill so you need to make sure you are 100% before you go back xx

[Tryx in reply to hayleys900]

Hi thanks for the reply,

This was my first lap and they removed the endo from the uterosacral ligaments, not sure if it was both or a particular side to be honest. This Friday will be four weeks and I was kept for two nights to recover. My pain is more or less the same but just waiting for it to all settle I guess. All the best for your recovery xx

[hayleys900]

You to xx

[lighteningmartinson]

Thank you all for posting. I have been crippled by my uterosacral ligament covered with Stage 4 Endo. My sciatic nerve has been firing for since 2008 without a break. Most days I just want to cry and cry and cry in pain.

[Anri in reply to lighteningmartinson]