Endometriosis

[nimblejim]

It will be SO worth it. And like you say being positive is so important. I had pretty bad cramping this month but my actual period was ok in the end, not too heavy, so that is a blessing.

 

[fifi-folle]

Good! Well not good it was AF but glad it wasn't too painful. I used to have oramorph for CD1/2, glad I'm not on that any more!!!! Having to reschedule my appointment with midwife who does reflexology today as I am totally bunged up with the cold again, well it was flu over Xmas/New Year so should be grateful. So impressed that the NHS does alternative therapies, they've referred me to her to see if she can help with the endo pain. I know acupuncture did so hopefully I can get another appt soon!

 

[Dani79]

I just joined today and its been great reading all the post. Last December I had hysteroscopy, laprocopy, dye test, adhesiolysis and during the procedure they observed severe endometrosis on the left side. Been trying for a baby for almost 2yrs now and the Doctors have decided the best option to conceive is through IVF so i have a followup in feb to discuss the plan.

I had the same procedure 4yrs ago but wasnt married then and didnt really understand endometrosis like i do now, I have always had very painful periods and clots and constant pelvic and abdominal pains.

I was going to have an IUI in July last year as i was about to start the IUI the scan showed some cyst and later discovered it was endometrosis cyst again. post procedure had a better period ,no clotting and less pain. I am 5days late and i had actually thought i was pregnant but the test showed negative but still have not seen my period.

Living with endometrosis means living with constant mood swings. Done a lot of research and found out that the symptoms can be improved by a change in diet and excercise but light excercise like Yoga. diet changes like avoiding meat, wheat, sugar can improve symptoms a great deal and also having accupunture and chinese herbs can help with the pain and improve fertility.
I am glad I joined cos i can gain more knowledge from women in the same situation as me.

 

[fifi-folle]

Dani I was told by several doctors and even my acupuncturist that we would never conceive without help but we have! Keep trying, keep your hopes up and you never know!! And it's one way to keep busy til the appointment comes through for IVF!

 

[nimblejim]

Hi Dani, I completely agree with Fifi. In fact Fifi's story is inspirational. If you have to do IVF that is great, but don't give up. I know how hard it is month after month not getting pregnant, and it is very hard to keep positive. But it is so important to keep going.

I have changed my diet and it has had a massive effect on my endo symtpoms. For me, increasing my fibre content has been a biggie as not to be too graphic, but going to the loo at least once a day has made such a difference. I eat natural museli and add lots of linseeds and fruit. I am sad to say that chocolate, spices and red meat (particularly processed red meat like sausages) are real badies. My endo symptoms are very much like IBS. The best website I have come across is https://www.endo-resolved.com/diet.html.
I don't believe in being too extreme but there is no doubt that a mainly vegetarian diet and not eating big meals has helped massively. I find that if I have eaten something that causes cramping, it can take days for the cramping to subside, so I really try to be so careful with what I eat. Particularly as I am trying for a baby and I want my body to be as receptive as possible! I hope I haven't gone on too much!

 

[nimblejim]

Another thing I would add is that that website says not to have any diary. I think that is a bit extreme as it is essential for trying to conceive. Diary doesn't seem to aggrevate my symptoms anyway, but I have full fat milk on my cereal and some cheese. I think it is important to be balanced. Stay away from soya! And I did try Agnus Castus, but it did not agree with me. Be careful using them as they can exaserbate endo symptoms. You just need to find out the triggers for you.

 

[nimblejim]

Hi, not sure if this thread is still going! I was just wondering if anyone experiences pain during sex, particularly during ovulation? My cervix feels very sore afterwards and I wasn't sure if this is due to my endometriosis and if it will cause a problem with getting pregnant?

 

[fifi-folle]

Yes, and at other times too. I believe it's from endo in pouch of douglas. It shouldn't affect ttc unless it's stopping you from bding. My mum suggested the turkey baster method if it was too sore. Thankfully it never came to this!!

 

[labmommy]

I experienced it! Until my lap that is, after getting cleaned out I feel great.

 

[nimblejim]

Thanks for replying guys. It was so painful that I only managed to have sex on the day of the LH surge and not the following couple of days so fingers crossed that is enough. Using preseed does help with soreness around the area but doesn't help with the cervix area. Endo is such a horrible disease.

 

[nimblejim]

My boobs are sore already which is a classic PMS sign for me, so I am pretty sure I am out again this month. I think it would help if my husband and I had more sex but I really struggle as I get so sore. Pressed does help but I still get sore. Do any of you guys have any tips? The missionary position is the most comfortable for me. I think I get tense as I worry about the pain so I do not always relax and get into it! Any tips would be lovely!

 

[fifi-folle]

Sorry there's no way to answer this without TMI!

For us me on top works best, that way I can control the penetration and reduce the risk of it hurting. Plenty foreplay helps too, otherwise I'd be too tight and it'd hurt more. Sometimes though it just wouldn't work. Taking PKs about 1/2 hr beforehand helps, or some alcohol if you drink it for relaxation as half the problem is being too tense (which is understandable when you get to the point where you expect it to hurt.)

 

[nimblejim]

Thanks for the reply. I will try on top and see how it goes! Alchohol is a great idea, I will stock up with Baileys!! I hate sore boobs, I never used to get them but now I get them as soon as I have ovulated right through to my period and it is a sign I am not pregnant so always dread getting them. But I am determined to be positive and keep going.

 

[labmommy]

Hi! I'm with fifi, we have to do it with me on top each time. I have read its actually better for my tilted uterus. Not sure if you have one too (since a great deal of endo girls have one) but I have read the back position is the best. That's up to you though hon

 

[nimblejim]

The consutlant I saw thought I might have a tilted uterus but wasn't sure for certain as I didn't have a laparoscopy. I had thought going on top would be painful but will give it a go. Are you trying yet after your laparoscopy?

 

[fifi-folle]

No one has mentioned my uterus is tilted but then they fail to mention so many things! I was told I had a wonky cervix by one nurse

 

[nimblejim]

You know what Fifi, for me the hardest thing is getting answers!! The doctors always fobbed me off and the consultant I eventually saw (after a lot of nagging!!) was good but didn't want to do a laparoscopy so I don't actually know how severe I am. Do you think I should demand a laparoscopy? I think the consultant was worried because I am 38 it might take time and the healing etc, that it is best to keep trying. Sometimes I feel so on top of the endo, and then bang, out of the blue the cramping, soreness, fatigue etc comes back and it is so debilitating. Anyway, rant over with!!!

 

[nimblejim]

By the way, have you tried Lepricol? I get terrible IBS with my endo and am giving it a go to see if it calms it down. It tastes pretty horrible but I am willing to give anything a go!!

 

[fifi-folle]

Not come across that one I'm afraid. I was put off having a lap for years by doctors who didn't think it was necessary, I wish they had done one when I first presented with problems, we could then have made an informed decision to start ttc much sooner, possibly avoiding the m/cs. I would suggest a lap would be useful, you may have better chances of conceiving if they remove the endo and clear your tubes (if necessary). The recovery isn't too bad really and if you have been trying for ages it might be what you need. I think the docs avoid doing them a lot of the time due to cost. We went private through DH's healthcare so I saw how much it cost... all in it was around £4000.

 

[nimblejim]

Well, I do have private health insurance for work but when I made enquiries initally was told that I had to exhaust all possibilities in the NHS, so didn't do anything. Hopefully I was misinformed as it appears that as long as I have a referal letter from from doctor I can go private. So, I went to the doctor tonight and he is going to write me a letter. Fingers crossed when I ring up the insurance people tomorrow they will say go ahead with a private apointment. I would just like to know the severity of my endometriosis to see what I am up against and then I can make informed decisions.

How is the pregnancy going Fifi?